Re: Cathing Questions

November 21, 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

> > >

> > === 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

> >

>

November 21, 2007

In a message dated 11/21/2007 1:29:26 A.M. Eastern Standard Time,

lindafilipi@... writes:

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.

, do you mind if I share this information (without names) with some

other groups where I know young people who cath? They probably have to find

this out for themselves, but maybe hearing about how it was common to die from

this in the earlier days would help prevent some of them from rebelling in

this way...

Connie

Mom to Sara 16, Nicky 9 (GI issues, megacolon), and 7

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal

fistula imperforate anus (repaired 5/00, managed with daily Exlax), single

kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long segment

lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum 8/06),

extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00,

5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) tibial

torsion

and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux,

DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most

beautiful smile ever)

conni60640@...

Our website: _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

VACTERL/VATER support _http://health.groups.yahoo.com/group/VACTERLNetwork/_

(http://health.groups.yahoo.com/group/VACTERLNetwork/)

TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_

(http://health.groups.yahoo.com/group/LMC-TCS/)

Congenital scoliosis support group

_http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/)

S. Jersey

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November 21, 2007

Thanks for sharing !! Have you only had one surgery?

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

> >

>

November 21, 2007

Connie and Amber,

Amber, I would definitely do a count and see how many they sent you. See

how many they allotted per day. If you got a big box, and it contains a

variety of different cath types, they may be sending you a variety of

samples. When I first started cathing, my vendor sent a huge box of samples

of every catheter type out there that was latex free to see what I liked and

didn't like. Then I ordered the kind I liked and worked for me. Typically,

the vendor will send you the # that your doc orders. For example, if your

doc says you should be cathing Ky every 4 hours, then you will get enough

for 6 a day. The problem some people run into is when their insurance

doesn't cover single use caths. Some insurance's make you document a

certain number of UTIs in a certain period of time (many using the Mcare

guidelines) as far as who can have single use and who can't. What blows my

mind is that the FDA has only approved catheters for single use only. So,

how an insurer (whoever that may be - Mcare or private) can tell you to use

them differently, blows my mind. But, if you get the UTIs (and they can't

just show up positive on the screener in the doc's office, they have to

culture positive to " count " ), and they do grow " uglies " then it is not

difficult to qualify.

For those on Mcare who use traditional Mcare, you might want to consider

going to a Mcare Advantage plan. I find those much more user friendly. I

screen my companies very carefully. The company I have now has been

wonderful (the company I had last year good, but not as great as this one).

At a minimum, the Mcare Advantage plans are required to offer at least the

same coverage as traditional Mcare. But most offer additional coverage. So

with a single plan the coverage you receive is like having Mcare + a

supplement. The big advantage for people on Mcare because of disability is

that the Mcare supplement plans available to people on Mcare because of

disability (rather than b/c they are 62+) are limited, cost more and offer

less coverage. The advantage plans make no distinction between those of us

on Mcare because of disability or seniors. Before I decide on a plan, I

pick those that meet my " financial " requirements and then I call and meet

with representatives. I make sure that they pay for what my doc says is

" medically necessary " and NOT Mcare guidelines. The company I have now pays

for my single use catheters (no questions asked -- just got my Rx from my

doc); they recently approved a home INR monitor for my coumadin (according

to Mcare guidelines, the only people that can be approved are those that

have had mechanical valve replacements. My doc just sent the Rx, and wrote

a letter explaining my need and I wrote a letter as well. My doc faxed the

info and it was approved in less than 3 days). Right now, I am getting a

new wheelchair -- and NOT the kind that traditional Mcare would pay for.

So, that is just an option for those that have had the usual problems that

plague people on traditional Mcare. But make sure you screen your Mcare

Advantage plans thoroughly.

Connie,

Dialysis is nasty. It does nasty things to your body and is really hard on

you. Not to mention how much of your time it takes -- 3-4 hours a day 3

times a week. Who wants to do that. I have a friend that has been in renal

failure since 7th grade. She has had 2 transplants - both rejected and now

trying to get her 3rd. If she is able to find a 3rd donor, it is her last

chance. If lets you share the info (I'm sure she will), let those

kids know that how they care for their kidneys now will have an impact for a

long time to come. I know so many para's that are so lazy when it comes to

cathing. And I'm guilty at times, I'm sure we all are. But something so

little is so important.

jenn

>

> In a message dated 11/21/2007 1:29:26 A.M. Eastern Standard Time,

>

> lindafilipi@... <lindafilipi%40cox.net> writes:

>

> 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.

>

> , do you mind if I share this information (without names) with some

> other groups where I know young people who cath? They probably have to

> find

> this out for themselves, but maybe hearing about how it was common to die

> from

> this in the earlier days would help prevent some of them from rebelling in

>

> this way...

>

> Connie

> Mom to Sara 16, Nicky 9 (GI issues, megacolon), and 7

> (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal

> fistula imperforate anus (repaired 5/00, managed with daily Exlax), single

>

> kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long

> segment

> lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum

> 8/06),

> extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00,

> 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01)

> tibial torsion

> and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux,

> DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most

> beautiful smile ever)

> conni60640@... <conni60640%40aol.com>

>

November 21, 2007

,

That is one cath I have yet to try, but I've heard good things about them.

One good thing about them is the lube alone. A lot of people don't use

lube, but it can cause little tears in the urinary tract which is the

perfect opening for germs. Also, since all you do is add water, the " lube "

is kind of self-contained. Rather than using a tube of lube (most people

use a multi-use tube rather than single use packets for economy -- the

single use packets are more expensive). As soon as you open the big tube,

the top is contaminated. Most people don't take the time to disinfect the

top of the tube with an alcohol wipe or even squeeze out the first bit and

discard it to get some that was not touching the top (which is covered in

germs -- you generally have to set it down somewhere while you lube up the

cath -- and just think about all the places you set that cap down - nowhere

sterile!). The hydrophilic caths are also single use. So, there are many

reasons that the hydrophilic caths are an improvement over straight caths

(either single use or wash and reuse) when it comes to infections.

I'm glad to hear another good report about them.

Jenn

>

> > > > >

> > > > > 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

> > >

> >

November 22, 2007

- thanks for the suggestion. I did count and there were 120

caths and 30 packets of betadine and random amount of lube. I called

the home health company that orders her supplies and they said that

the amount I got was for 30 days so they are evidently counting single

use as " single use " . What kills me though is that Medicaid will only

pay for 15 colostomy bags per month!! Luckily Medicaid is not our

primary insurance and we have a third on Ky so between the three it

all gets taken care of!!!

So.. glad to know what our " allotment " is!

And they only sent us the one kind of cath... of course they did the

same thing with the colostomy bags and we had no idea that the

Hollister company would send us this amazing sample pack until over a

year of using the stupid things! Grrrrrrrr.......

Amber

>

> >

> > In a message dated 11/21/2007 1:29:26 A.M. Eastern Standard Time,

> >

> > lindafilipi@... <lindafilipi%40cox.net> writes:

> >

> > 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.

> >

> > , do you mind if I share this information (without names)

with some

> > other groups where I know young people who cath? They probably have to

> > find

> > this out for themselves, but maybe hearing about how it was common

to die

> > from

> > this in the earlier days would help prevent some of them from

rebelling in

> >

> > this way...

> >

> > Connie

> > Mom to Sara 16, Nicky 9 (GI issues, megacolon), and 7

> > (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06)

perineal

> > fistula imperforate anus (repaired 5/00, managed with daily

Exlax), single

> >

> > kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long

> > segment

> > lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum

> > 8/06),

> > extra left rib, genital anomalies with hypospadius (repairs

9/00,11/00,

> > 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01)

> > tibial torsion

> > and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI

reflux,

> > DGE/gastroparesis, mild swallowing dysphagia, eating issues and

the most

> > beautiful smile ever)

> > conni60640@... <conni60640%40aol.com>

> >

>

November 23, 2007

By all means share it with anybody! I am blessed that I chose nursing as my

career. It exposed me to truths that if were missed would have caused me severe

health complications.

Blessings,