Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
Guest guest Posted November 21, 2007 Report 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
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