Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
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