Guest guest Posted November 18, 2007 Report Share Posted November 18, 2007 Hi Amber On Nov 17, 2007 7:37 PM, Amber Schmidt wrote: > For those of you who cath... either yourself or your child. > > When did you begin cathing? After my 3rd detethering full time. Before > that, only at night. > > Does it hurt? Not at all, I do not have any feeling there. > > How often are you cathing? Are you cathing in public places? Hahahaha.. > Not in the middle of middle of Macy's <grin>, but certainly in their > washroom. I purchased a watch from a bedwetting company that has over 12 > alarms to remind me every 3-4 hours to go since I have no feeling to tell me > when I have to go. > > Are you " dry " in between cathings? I was for the longest time and just > started to leak a little bit after a year. I had a stim implanted and now I > finally have use for the darn thing which stops the leaking. > > Have you had any surgeries to alleviate your issues? If so what? > Initially I had a stim implanted because I had leaking and up to 12 trips to > the bathroom every night. After the surgery I lost all function (Adhesive > Arachnoiditis). I no longer had that problem but it was a king of 'careful > what you wish for' since I could no longer go at will at all. The stim > finally does have a purpose (as I said earlier) so all is good. I also had > a bladder 'sling' which did nothing. > > How often do you have infections? UTI, Bladder, Kidney, etc. Initially I > did but as I gained more experience and my insurance company started paying > more than 60 cents per box of $40.00 cath's that is no longer a problem. > > For surgeries that do not require a catheter do they put on in because > you will be unconscious? Yes, since I am unable to control my bladder and > I have been know to retain urine they will insert a catheter for my safety. > > I think that is all I can think of right now! > > Feel free to email me offlist if you would rather not discuss on the > board! > > Amber > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2007 Report Share Posted November 18, 2007 Wow... thanks!!! Its all so much to intake! Amber > > > For those of you who cath... either yourself or your child. > > > > When did you begin cathing? After my 3rd detethering full time. Before > > that, only at night. > > > > Does it hurt? Not at all, I do not have any feeling there. > > > > How often are you cathing? Are you cathing in public places? Hahahaha.. > > Not in the middle of middle of Macy's <grin>, but certainly in their > > washroom. I purchased a watch from a bedwetting company that has over 12 > > alarms to remind me every 3-4 hours to go since I have no feeling to tell me > > when I have to go. > > > > Are you " dry " in between cathings? I was for the longest time and just > > started to leak a little bit after a year. I had a stim implanted and now I > > finally have use for the darn thing which stops the leaking. > > > > Have you had any surgeries to alleviate your issues? If so what? > > Initially I had a stim implanted because I had leaking and up to 12 trips to > > the bathroom every night. After the surgery I lost all function (Adhesive > > Arachnoiditis). I no longer had that problem but it was a king of 'careful > > what you wish for' since I could no longer go at will at all. The stim > > finally does have a purpose (as I said earlier) so all is good. I also had > > a bladder 'sling' which did nothing. > > > > How often do you have infections? UTI, Bladder, Kidney, etc. Initially I > > did but as I gained more experience and my insurance company started paying > > more than 60 cents per box of $40.00 cath's that is no longer a problem. > > > > For surgeries that do not require a catheter do they put on in because > > you will be unconscious? Yes, since I am unable to control my bladder and > > I have been know to retain urine they will insert a catheter for my safety. > > > > I think that is all I can think of right now! > > > > Feel free to email me offlist if you would rather not discuss on the > > board! > > > > Amber > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2007 Report Share Posted November 18, 2007 Oh shoot, Amber. You'll soon realize that there are very few questions we won't discuss here. Cathing isn't an " embarrassing " thing. It's just what it is. I have been cathing for more than ten years. I started when I was 30. It doesn't hurt me at all. I can't pee unless I cath, so yes, I cath in public places. As long as no one else touches my catheters, I don't get a lot of infections. In fact, from the time I started cathing in '97 until I had my son four years ago, I didn't get a single infection, which was a record for me. Prior to beginning to cath, I had two bladder infections every month. I'd take antibiotics for a week, and then by the time a week went by without, I had another infection. This was on top of taking preventive antibiotics. So cathing was a godsend for me. I cath 6 times a day. I don't mind cathing. I know not everyone feels as fine with it as I do, but I was living a nightmare before I started cathing. I had ended up in the ER with kidney spasms several times because my bladder had stopped working and the urine wouldn't leak out, and it backed up into my ureters and caused nasty pain. I called it suicide pain. It makes me want to throw up to even think about it. So for me, cathing ended that horrid chapter in my life. I think that's why it doesn't bug me a bit. No surgeries to change how I pee, though I guess there is a really cool gadget that you can have implanted that you can open and close your urethra with a magnet or something. If that works out well for people like me, I might go for that. Not having to buy catheters really appeals to me. I had a catheter when I had my c-section four years ago, but I think that is par for the course for a c-section. Unless I'm having a sneezing or coughing fit, I am always dry between cathings. I'm very lucky to not have any leaks. Of course, even if I leak, I can't feel it, so when I was pregnant, I would stand and leak and dang, didn't even really know it until it got about four inches down my leg (ewww, gross, sorry!). I wore dresses almost all the time by the end because then no one would know it but me. Anyway, please ask as many questions as you like. Most of us aren't too shy about answering them. There are worse things than cathing, in my opinion. I remember wetting my pants in school and being mortified. I'd rather cath than have infections and wet my pants. --- Amber Schmidt wrote: > For those of you who cath... either yourself or your > child. > > When did you begin cathing? > > Does it hurt? > > How often are you cathing? Are you cathing in > public places? > > Are you " dry " in between cathings? > > Have you had any surgeries to alleviate your issues? > If so what? > > How often do you have infections? UTI, Bladder, > Kidney, etc. > > For surgeries that do not require a catheter do they > put on in because > you will be unconscious? > > I think that is all I can think of right now! > > Feel free to email me offlist if you would rather > not discuss on the > board! > > Amber > > > Check out my blog: http://princessmatildalovestostamp.blogspot.com ________________________________________________________________________________\ ____ Get easy, one-click access to your favorites. Make Yahoo! your homepage. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2007 Report Share Posted November 18, 2007 When did you begin cathing? When I was 10, after I had my de-tethering Does it hurt? No, not at all and I even use a stainless steel catheter most of the time and I haven't needed to use any KY jelly since I was little. How often are you cathing? Are you cathing in public places? When I was younger I had to cath more often...usually 4 times a day. Now I usually cath in the am and pm and sometimes if I have to be out for a long time I will cath before I leave. I do take them with me just in case I need to. Are you " dry " in between cathings? When I was younger I would sometimes still leak but I always wore a sanitary pad everyday so I wouldn't have to be embarrased with kids asking me why I had to go home while I was playing. Have you had any surgeries to alleviate your issues? If so what? I had the Reflux surgery when I was 5 but, that was it. I also have a neurogenic bladder so nothing will really help cause that is due to my spina bifida occulta. How often do you have infections? UTI, Bladder, Kidney, etc. When in the hospital a lot for bladder infections but only one kidney infection from the time I was 6 til I was 14 then all of the sudden Poof! I hardly ever have any. For surgeries that do not require a catheter do they put on in because you will be unconscious? Yes, I think so. I only had them in for my bladder surgery and my spinal cord surgeries. I've had knee surgeries and ankle surgeries and never had a catheter. - S. I think that is all I can think of right now! Amber Schmidt wrote: For those of you who cath... either yourself or your child. When did you begin cathing? Does it hurt? How often are you cathing? Are you cathing in public places? Are you " dry " in between cathings? Have you had any surgeries to alleviate your issues? If so what? How often do you have infections? UTI, Bladder, Kidney, etc. For surgeries that do not require a catheter do they put on in because you will be unconscious? I think that is all I can think of right now! Feel free to email me offlist if you would rather not discuss on the board! Amber Office Manager Tom's Electric,Inc - Fax www.TomsElectric.com --------------------------------- Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2007 Report Share Posted November 18, 2007 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 about the number of infections I get b/c I am pretty meticulous about being clean. Even getting infections with the touchless caths. He said that some people are just more prone to infections, no matter what they do and no matter how careful they are. B/c I know some people who don't use KY, don't use wipes of any kind, reuse their caths and are just so lackadaisical about catheter cleanliness and they NEVER have infections. When I had to reuse catheters, I wouldn't' even reuse them as long as my friends do and I was constantly infected. Even now with the touchless and getting more infections than they do. My doc said its just they way some people are. Some people will get them no matter what they do to prevent the infections. I'm also resistant to 2 antibiotics most common to treat UTIs. There are only 3 things I can take for my UTIs that work and I'm not resistant to. So, if Ky starts getting frequent UTIs, and you have gone from reusing to touchless and analyzed your technique, sometimes there isnt' anything you can do. For surgeries that do not require a catheter do they put on in because you will be unconscious? I thought all surgeries where a person is going to be unconscious the person is cathed with a foley. B/c even my dad, who has no problems, has had a catheter put in every time he was unconscious, regardless of the length of time and regardless of inpatient or outpatient (he has had 4 foot surgeries (he shattered his heel bone and ended up nearly having to have it amputated) and has also been through prostate ca treatments. But he was always cathed, But due to Ky's inability to urinate on her own, they would put in a foley for any surgery where she would be unconscious. Jenn On Nov 17, 2007 8:37 PM, Amber Schmidt wrote: > For those of you who cath... either yourself or your child. > > When did you begin cathing? > > Does it hurt? > > How often are you cathing? Are you cathing in public places? > > Are you " dry " in between cathings? > > Have you had any surgeries to alleviate your issues? If so what? > > How often do you have infections? UTI, Bladder, Kidney, etc. > > For surgeries that do not require a catheter do they put on in because > you will be unconscious? > > I think that is all I can think of right now! > > Feel free to email me offlist if you would rather not discuss on the > board! > > Amber > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2007 Report Share Posted November 18, 2007 Thanks!!!!! Yes I am very open about all of this with everyone but its all just medical for us. igh is only 16 months old and has spent probably 3 total months of her life in a hospital! So its no biggie but I know that to others it may not be the same. I really appreciate the input! Amber > > > For those of you who cath... either yourself or your > > child. > > > > When did you begin cathing? > > > > Does it hurt? > > > > How often are you cathing? Are you cathing in > > public places? > > > > Are you " dry " in between cathings? > > > > Have you had any surgeries to alleviate your issues? > > If so what? > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > > For surgeries that do not require a catheter do they > > put on in because > > you will be unconscious? > > > > I think that is all I can think of right now! > > > > Feel free to email me offlist if you would rather > > not discuss on the > > board! > > > > Amber > > > > > > > > > > > > Check out my blog: http://princessmatildalovestostamp.blogspot.com > > > ________________________________________________________________________________\ ____ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2007 Report Share Posted November 18, 2007 Thanks for sharing!!! It really is interesting to try and see the big picture of this whole thing. Amber > For those of you who cath... either yourself or your child. > > When did you begin cathing? > > Does it hurt? > > How often are you cathing? Are you cathing in public places? > > Are you " dry " in between cathings? > > Have you had any surgeries to alleviate your issues? If so what? > > How often do you have infections? UTI, Bladder, Kidney, etc. > > For surgeries that do not require a catheter do they put on in because > you will be unconscious? > > I think that is all I can think of right now! > > Feel free to email me offlist if you would rather not discuss on the > board! > > Amber > > > > > > > > > Office Manager > Tom's Electric,Inc > > - Fax > www.TomsElectric.com > > > > > --------------------------------- > Never miss a thing. Make Yahoo your homepage. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2007 Report Share Posted November 18, 2007 Hey Amber, Before I had feeling, it didn't hurt to cath - since having some feeling return in the past four months, it's not the most comfortable thing to do at times. Not painful - just not comfortable. Yes, as you've read, when you can't pee without a catheter, you have to catheterize in public bathrooms at times, just like the rest of the world. It's not a big deal - no different than at home except I don't wash those catheters, I throw those away when I get home. I don't do this big sterile thing with cathing - if I can use clean caths, I do - when I start to run low, I rinse and reuse. I don't use gloves when I cath nor do I do the whole " cleansing " before hand to keep germs low. I do get infections, but at a much lower rate than pre-cathing. I am going to try using the lubricant soon though to see if that makes the uncomfortableness go away. Kathy Re: Cathing Questions Thanks!!!!! Yes I am very open about all of this with everyone but its all just medical for us. igh is only 16 months old and has spent probably 3 total months of her life in a hospital! So its no biggie but I know that to others it may not be the same. I really appreciate the input! Amber > > > For those of you who cath... either yourself or your > > child. > > > > When did you begin cathing? > > > > Does it hurt? > > > > How often are you cathing? Are you cathing in > > public places? > > > > Are you " dry " in between cathings? > > > > Have you had any surgeries to alleviate your issues? > > If so what? > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > > For surgeries that do not require a catheter do they > > put on in because > > you will be unconscious? > > > > I think that is all I can think of right now! > > > > Feel free to email me offlist if you would rather > > not discuss on the > > board! > > > > Amber > > > > > > > > > > > > Check out my blog: http://princessmatildalovestostamp.blogspot.com > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2007 Report Share Posted November 18, 2007 Hey all, here are my answers, When did you begin cathing? At the age of 13 after my surgery. Does it hurt? Not at all. How often are you cathing? Are you cathing in public places? Every 3-8 hours, depends on what I drink and the weather. I do not have to wake up at night to cath. I cath anywhere that I would've done before. Are you " dry " in between cathings? If I am full, I sometimes leak. I sometimes leak when I cough or sneeze. It sucks to be sick. I leak at the gym sometimes when I strain. Have you had any surgeries to alleviate your issues? If so what? None related to my bladder situation. How often do you have infections? UTI, Bladder, Kidney, etc. I think I have gone to a dr. for an infection maybe 5-8 times during my 29 years of cathing . I am sure that I have had some that I didn't seek treatment for. For surgeries that do not require a catheter do they put on in because you will be unconscious? I don't know about this one. I think that is all I can think of right now! Feel free to email me offlist if you would rather not discuss on the board! Amber Not Medical Advice. We Are Not Doctors. Need help with the list? Email kathy@...,michelle@..., rick@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2007 Report Share Posted November 20, 2007 I know that Dr. Alam will not even think about a Mitrofanoff until 10 years or so down the road. I know a lot can change between now and then... I am just trying to wrap my mind around the spectrum of TCS as I know we will have to make a decision about igh soon. Lucky enough for us and Ky she has three insurances! Between those she manages to get everything paid for. But our home health brought us this huge box of cathing stuff and maybe before I go blowing through it I should check and see how many caths etc we are allotted per day! I just assumed what they sent would be a one month supply!! EEEK!... maybe not! Amber > > > For those of you who cath... either yourself or your child. > > > > When did you begin cathing? > > > > Does it hurt? > > > > How often are you cathing? Are you cathing in public places? > > > > Are you " dry " in between cathings? > > > > Have you had any surgeries to alleviate your issues? If so what? > > > > How often do you have infections? UTI, Bladder, Kidney, etc. > > > > For surgeries that do not require a catheter do they put on in because > > you will be unconscious? > > > > I think that is all I can think of right now! > > > > Feel free to email me offlist if you would rather not discuss on the > > board! > > > > Amber > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2007 Report Share Posted November 20, 2007 I know I am late on adding a comment here, but I just wanted to add the success we have had with the Bladder Stimulator. We have now had it for 4 years, almost 5. She has had 4 UTI's since. Occurring during the time she was tethered. And then 2 post op tethered cord because the stimulator was off. This is a great change from the monthly UTIs she suffered from before hand. She also, is not leaking in between potty breaks. She no longer knows when she has to go, but we follow a timed void schedule, and it works for her. For her, this has been heaven sent. From the horrible memories she had as a younger girl, from VCUG and Urodynamic studies we couldn't even talk to her about cathing and she would hyperventilate. So, when the opportunity came up for this study, we tried it. I know we do not know the long term effects, but I was worried about the here and now. I know this is not for everyone, and trust me we have a public washroom phobia also, but this is what worked for us. Thanks, Tommi www.caringbridge.org/visit/amandapeters --- Amber Schmidt wrote: > I know that Dr. Alam will not even think about a > Mitrofanoff until 10 > years or so down the road. I know a lot can change > between now and > then... I am just trying to wrap my mind around the > spectrum of TCS as > I know we will have to make a decision about igh > soon. > > Lucky enough for us and Ky she has three insurances! > Between those > she manages to get everything paid for. But our > home health brought > us this huge box of cathing stuff and maybe before I > go blowing > through it I should check and see how many caths etc > we are allotted > per day! I just assumed what they sent would be a > one month supply!! > EEEK!... maybe not! > > Amber > > > > > > > Amber, > > > > There isn't anything you can ask that we won't > talk about on this > list -- > > bowel, bladder, sex (although its a bit early for > that one!). Its > all been > > talked about before. > > > > When did you begin cathing? > > After my third surgery which was for > hydrosyringomyelia (developed > after my > > first two untetherings) because it left me a T12 > paraplegic. > > > > Does it hurt? > > Not unless I have a UTI. Despite being a T12 para, > I have gotten some > > sensation and movement back below that. I have > normal feeling down > to about > > the top 1/4 of my thighs, abnormal feeling from > there to my > kneecaps, and > > nothing my neuropathic pain from below my > kneecaps. > > > > How often are you cathing? Are you cathing in > public places? > > I cath when I feel like I have to pee. It can be > anywhere from 3 > times a > > day to 8 (depending on how much I drink). I would > say I average 5, > although > > I must be drinking an awful lot, b/c I ran out of > catheters this > past month, > > so I made sure to order enough for 6/day this > month). I cath in public > > places ALL the time. Grocery store, movie > theater, mall, restaurant, > > hospital, doctor office -- and that is just a > sample of the past week. > > > > Are you " dry " in between cathings? > > 99% of the time. As long as I go when I feel like > I need to. I > can " hold " > > it for a little while (or what I feel like is > " holding " it. It is > probably > > just gaging how much more my bladder can hold > before the dam breaks > free. > > Sometimes, I say to myself, " I can wait just a > little longer " when > I'm in > > the middle of something and dont' want to be > bothered -- only when > I'm home > > of course -- and OOPS -- I guess I was wrong! And > the big puddle > starts to > > form between my legs. I guess I really couldn't > wait a little > longer, could > > I? The only other time I have some problems is at > night. If I have > a UTI, > > I can have problems with continence at night. And > if I have been up > for a > > long time and am REALLY sleepy, I can sleep > through it (I would also > sleep > > through the fire alarm at this point). It is > usually when I have > drank a > > lot (and of the wrong things - alcohol or > caffeine, coffee or water) > and my > > bladder fills REALLY fast, and I pee a tremendous > amount only an > hour or two > > after going to bed, and of course, I am dead to > the world. So, I have a > > waterproof mattress pad on my bed, and I also > sleep on a " blue pad " > (which > > will generally catch most accidents) so I don't > have to change the > sheets > > and mattress pad. Generally the only time I'm > incontinent during > the day is > > when I'm doing something stupid and ignore my body > telling me to go > to the > > bathroom. > > > > Have you had any surgeries to alleviate your > issues? If so what? > > no surgeries. I know some people have mentioned > the stim, but there > is also > > the stoma (like Ky needs another). But if > incontinence becomes a big > > problem, they can put a stoma in where they > enlarge the bladder and > you cath > > through your belly button. Then (I think you have > the choice) you > can close > > off the lower portion, so you don't (err, can't) > leak. That might be an > > option when she gets older. A lot of quads use > the stoma option b/c > they > > cannot cath themselves independently but with the > stoma, they can > b/c you > > don't have to pull down you pants, etc. I think > it also cuts down on > > infections. But since they have to enlarge the > bladder, I think it > would > > probably be an option only once she was older. > But it is something you > > could ask about. > > > > How often do you have infections? UTI, Bladder, > Kidney, etc. > > When I was first paralyzed, I had a constant UTI. > Shepherd believes in > > reusing catheters. I arrived at rehab with a UTI > and it did not go away > > until I went home (they were treating it with an > antibiotic that I was > > resistant to. I'm sure that didn't help). The > infection came right back > > reusing catheters. And I was meticulous cleaning > and disinfecting > them. [as > > an aside -- for those on Medicare or other > insurances that say you > can only > > get 1 catheter per week, I don't understand how > they can do this > when the > > FDA has approved them as single use only. That is > like your > insurance co > > telling you to take some medication one way when > the FDA has > approved it for > > another specific use. Sorry -- I digress. That > is a pet peeve of > mine]. > > Anyway, then the urologist I was seeing before I > was paralyzed > changed me to > > single use catheters and things got a lot better. > I got about 1 UTI per > > month. Then I changed to touchless catheters. > That has been the > biggest > > blessing. I get about 3 UTIs a year with those. > I've had 2 kidney and > > bladder infections in the past 4 1/2 years. I > talked to my doc > === message truncated === Tommi 's Mom Chicago, IL. USA ________________________________________________________________________________\ ____ Get easy, one-click access to your favorites. Make Yahoo! your homepage. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > ________________________________________________________________________________\ ____ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi Amber, This message is also late but I thought I would respond anyway. I had my first TSC surgery when I was 3 (from LMC). Now I am 34. So for the last 31 years I have been cathing. For many years I was young and stupid. I would constantly reuse them without totally disinfecting them. I think when a person has a chronic condition you get use to it and can become lazy. After nursing school and working in the medical field I saw so many people on dialysis. I knew that I was headed there after many bouts of pyleonephritis (kidney infections). I also was resistant to many antibiotics. For the last ten years I have been super careful with keeping my catheters clean. I am lucky because my insurance will pay for 120 a month. I use them once and then clean them with antibacterial soap, then I boil them. My infection rate dropped from about 4 infections a year to 1 infection in the last 2 years! The advent of the clean cath changed the future for people with neurogenic bladders forever. Prior, many would die from renal failure and or complications. Now I believe that is why we pose such new challenges for the medical community. Until now those with LMC and/ or TCS (with a neurogenic bladder) wouldn't have lived this long. So new possibilities for complications arise but so will new solutions. I will continue to pray for those that seek new solutions to difficult circumstances. It can be done. Peace, Re: Cathing Questions Tommi that is very encouraging news!!! How is ? I have been trying to keep up with the Carepages but I am swamped right now! I am looking forward to shutting down the studio and heading to Chicago though!! Amber > > > > > > Amber, > > > > > > There isn't anything you can ask that we won't > > talk about on this > > list -- > > > bowel, bladder, sex (although its a bit early for > > that one!). Its > > all been > > > talked about before. > > > > > > When did you begin cathing? > > > After my third surgery which was for > > hydrosyringomyelia (developed > > after my > > > first two untetherings) because it left me a T12 > > paraplegic. > > > > > > Does it hurt? > > > Not unless I have a UTI. Despite being a T12 para, > > I have gotten some > > > sensation and movement back below that. I have > > normal feeling down > > to about > > > the top 1/4 of my thighs, abnormal feeling from > > there to my > > kneecaps, and > > > nothing my neuropathic pain from below my > > kneecaps. > > > > > > How often are you cathing? Are you cathing in > > public places? > > > I cath when I feel like I have to pee. It can be > > anywhere from 3 > > times a > > > day to 8 (depending on how much I drink). I would > > say I average 5, > > although > > > I must be drinking an awful lot, b/c I ran out of > > catheters this > > past month, > > > so I made sure to order enough for 6/day this > > month). I cath in public > > > places ALL the time. Grocery store, movie > > theater, mall, restaurant, > > > hospital, doctor office -- and that is just a > > sample of the past week. > > > > > > Are you " dry " in between cathings? > > > 99% of the time. As long as I go when I feel like > > I need to. I > > can " hold " > > > it for a little while (or what I feel like is > > " holding " it. It is > > probably > > > just gaging how much more my bladder can hold > > before the dam breaks > > free. > > > Sometimes, I say to myself, " I can wait just a > > little longer " when > > I'm in > > > the middle of something and dont' want to be > > bothered -- only when > > I'm home > > > of course -- and OOPS -- I guess I was wrong! And > > the big puddle > > starts to > > > form between my legs. I guess I really couldn't > > wait a little > > longer, could > > > I? The only other time I have some problems is at > > night. If I have > > a UTI, > > > I can have problems with continence at night. And > > if I have been up > > for a > > > long time and am REALLY sleepy, I can sleep > > through it (I would also > > sleep > > > through the fire alarm at this point). It is > > usually when I have > > drank a > > > lot (and of the wrong things - alcohol or > > caffeine, coffee or water) > > and my > > > bladder fills REALLY fast, and I pee a tremendous > > amount only an > > hour or two > > > after going to bed, and of course, I am dead to > > the world. So, I have a > > > waterproof mattress pad on my bed, and I also > > sleep on a " blue pad " > > (which > > > will generally catch most accidents) so I don't > > have to change the > > sheets > > > and mattress pad. Generally the only time I'm > > incontinent during > > the day is > > > when I'm doing something stupid and ignore my body > > telling me to go > > to the > > > bathroom. > > > > > > Have you had any surgeries to alleviate your > > issues? If so what? > > > no surgeries. I know some people have mentioned > > the stim, but there > > is also > > > the stoma (like Ky needs another). But if > > incontinence becomes a big > > > problem, they can put a stoma in where they > > enlarge the bladder and > > you cath > > > through your belly button. Then (I think you have > > the choice) you > > can close > > > off the lower portion, so you don't (err, can't) > > leak. That might be an > > > option when she gets older. A lot of quads use > > the stoma option b/c > > they > > > cannot cath themselves independently but with the > > stoma, they can > > b/c you > > > don't have to pull down you pants, etc. I think > > it also cuts down on > > > infections. But since they have to enlarge the > > bladder, I think it > > would > > > probably be an option only once she was older. > > But it is something you > > > could ask about. > > > > > > How often do you have infections? UTI, Bladder, > > Kidney, etc. > > > When I was first paralyzed, I had a constant UTI. > > Shepherd believes in > > > reusing catheters. I arrived at rehab with a UTI > > and it did not go away > > > until I went home (they were treating it with an > > antibiotic that I was > > > resistant to. I'm sure that didn't help). The > > infection came right back > > > reusing catheters. And I was meticulous cleaning > > and disinfecting > > them. [as > > > an aside -- for those on Medicare or other > > insurances that say you > > can only > > > get 1 catheter per week, I don't understand how > > they can do this > > when the > > > FDA has approved them as single use only. That is > > like your > > insurance co > > > telling you to take some medication one way when > > the FDA has > > approved it for > > > another specific use. Sorry -- I digress. That > > is a pet peeve of > > mine]. > > > Anyway, then the urologist I was seeing before I > > was paralyzed > > changed me to > > > single use catheters and things got a lot better. > > I got about 1 UTI per > > > month. Then I changed to touchless catheters. > > That has been the > > biggest > > > blessing. I get about 3 UTIs a year with those. > > I've had 2 kidney and > > > bladder infections in the past 4 1/2 years. I > > talked to my doc > > > === message truncated === > > > Tommi > 's Mom > Chicago, IL. USA > > > __________________________________________________________ > Get easy, one-click access to your favorites. > Make Yahoo! your homepage. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
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