Pre-transplant infection prevention with intermittent catheterization

[MomoMcSleepy]

Hey guys,

I can't get on the list or get approved for a live donor because I am getting frequent infections.  Blue Cross is only giving me 60 catheters a month, I urinate a lot now, and need 240-360 a month.  I have been washing them out, and getting NEW infections (so, introduced bacteria, presumably from cathing) every few weeks.

does anyone else have this problem?  Were you able to get more supplies from blue cross or whoever?  How?  Did sterile catheters each time reduce your infections?

I have a urostomy that is sort of continent, some leaks, so I  use a bag, too. 

anyone?  Bueller?

[Sue]

I have been self catheterising for the past 5 years. I catheterise every 4/5 hrs and used to get frequent infections which were treated with antibiotics. After a particularly nasty infection last August my Dr put me on daily low dose antibiotics and I have had no infections since then. I have to pay for my own catheters ( in Australia)  so the cost of using 6 new ones a day would be a little OTT. I use Milton steriliser, which enables me to use the same catheters for about two weeks.

[MomoMcSleepy]

Very interesting,I had never heard of it.  I checked out the product website and fro. Its spelling g I assume that it's an Australian product?  I am emailing my doctor about it.  He is sending me some handouts that show different techniques, like using alcohol and  freezing catheters, or a bleach solution.  The infectious disease guy thinks I will probably have to go on a low-dose antibiotic, but I have multiple colonized organisms, and some resistance, so it is tricky.  We are trying prevention first, and my urologist is calling blue cross to see what sort of documentation is necessary to get me approved for 300 month (I pee every 2-3 hours).. But the Milton solution is very interesting, thanks!

[Sue]

MIlton is generally used here for sterilising baby bottles

[lainiepop]

Hi, I am the same, get urine infections around 4-6 times a year. I had a bad one which kept coming back a couple of years ago and took a low dose antibiotic for 3 mths, after that was infection free for just over a year til i got pregnant then i had them loads. I'm having a live donor transplant from my dad in 4 weeks and i had a bad infection a couple wks ago was pretty ill (so annoying as hadnt had one for 7mths what timing!) as soon as i stopped the antibiotics it pretty much came back, im on them now and its cleared but i think i might be told to take a low dose b4 the op, as they were deliberating whether to do this anyway or straight after the op to protect me while i recover, i catheterise every 4-5hrs and dont need it til morning from night but they said after up will have to do it 2-3 hours and leave cathether taped in to drain in bag overnight. not quite sure how its all gonna work tbh will see after ive got the kidney. I used to use reusable (for a week) catheters soaked in milton but now i only use disposiable ones so will be going through them like nothing else! Im in the UK and don't pay for my prescriptions tho, so am extremely fortunate. When i mentioned to urologist i'd be using like 7 a day she said well you need it so u will have it on prescription. I always sterilise my hands before i catherise and i take antiseptic wipes to use if im using public toilets or in other peoples homes. At home i have a personal toilet roll away in a cupboard in bathroom away from any toilet or shower splash. Sounds a but ott and who knows if it helps. Ive also started covering stoma with waterproof plaster when i go swimming and in shower just in case as they say soaps can cause them. who knows, i sound really anal now and still get them! At the end of the day its just something i get and always will,i just make sure they;re treated asap by having sticks at home to test urine if im worried. Also i drink some water after emtying bladder as i read somewhere an empty bladder harbours more germs. And don't hold wee either. Sorry can't be any real help!

[dialysisadvocate]

I am not implying, please don't misunderstand ---- often the reason for frequent infections could be the technique you are using -- I would suggest that you contact your physician and ask for some guidance.. maybe, there is something you are doing that is contaminating the catheters, or the procedure itself.. Also, I saw on tv, some company, that will give more catheters.. Your doctor can also request, through your insurance carrier, more catheters... If they only provide a certain amount, often when they receive a request from the physician --- worded the correct way --- they will approve
Opinion of Roberta Mikles BA RN - Dialysis Patient Safety Advocate www.qualitysafepatientcare.com

[MomoMcSleepy]

I am not implying, please don't misunderstand ---- often the reason for frequent infections could be the technique you are using -- I would suggest that you contact your physician and ask for some guidance.. maybe, there is something you are doing that is contaminating the catheters, or the procedure itself.. Also, I saw on tv, some company, that will give more catheters.. Your doctor can also request, through your insurance carrier, more catheters... If they only provide a certain amount, often when they receive a request from the physician --- worded the correct way --- they will approve
Opinion of Roberta Mikles BA RN - Dialysis Patient Safety Advocate www.qualitysafepatientcare.com

No, no, you're right.  I was really good for years and as insurance slowly stopped paying for stuff like catheters, wipes, and syringes I got lax.  I would have to wash the same catheters over and over like 20 times and they would get yucky, but I didn't know what else to do, cause I was out of sterile ones and peed too often to  let them dry.  My doctor resisted prescribing 60 at first (nephrologist) but I told him how many times I was reusing and he changed the Rx.

I have been trying to wash my hands right before cathing, but didn't ave alcohol at first, so I made a wet soak and water cloth from paper towel at work, but I worry about soap, too, lanie.  I was told feature bladder is "clean, not sterile" and soap was ok, but I  know bacteria  breeds in it.

Also, since my surgery in 2003, it is hard to wash the site with the ostomy bag. It is two piece, of course, but the hole is so small that I  can't really get to it.

mostly, I am very  clean at home, but have a tough time at work or restaurants.  I can't stand public restrooms, they are so dirty to me.  I havd to lay my supplies out on this filthy toilet paper dispenser, etc.  Yuck!. Also at work I Redland about alkalinity takes me, cause someone Hs to "relieve me" (do my job for me) while I pee.

whew, time for bed, 5:30 comes early....working, but couldn't sleep!

[okarol]

My daughter has to self-cath every 4 hours during the day. She uses a new catheter each time. We are paying for them and it is not cheap. She still get infections and with only 14% function remaining in her transplanted kidney, we worry that these infections will knock out what she's got. No one has recommended any solution to this besides prophylactic antibiotics. They say this is common with self-cathing and is to be expected. I would love to find an answer to this. She has been cathing for 10 years.

I have also seen ads for free catheters for patients on Medicare - I found this online:

Medicare programs allow 200 intermittent catheters per month without additional medical documentation.

Medicaid programs typically allow 120 intermittent catheters per month without additional medical documentation.  Note: Benefits vary by state Medicaid plan.

Other insurance coverage varies by plan, and benefits must be verified at the time of intake.

This is a link to that site, but there are others: http://www.intermittentcatheters.com/catheters-medicare-medicaid.htm

[Sue]

I'm in Australia , I have to pay for all my catheters!  I have vesicoureteral reflux, my kidney function had remained stable at 16% for over 2 years following surgery to reimplant my ureters, I had an infection last August and my function dropped to 12%.

[Rain]

I've been self catherizing myself for over 23 years since the age of 5.
I use a clean catherater every time and I wipe myself with Benzallkonium Chloride Wipes (http://well.ca/products/pdi-benzalkonium-chloride_16837.html)

Also I use a good lubricating jelly like Muko gel and it helps reduce infections.  I was getting infections even with all this, every 3-4 months.   What I found helped was a probiotic that is formulated for UTIs.   Since I started taking it I haven't had a UTI in 9 months.

I cath every 4-5 hours even though I'm on dialysis to make sure my bladder is empty to reduce infections as well.  I also have to irigate my bladder once a week since part of my bladder is rebuilt using my intestine.  Diary tends to also increase the amount of mucus I produce so I am light on the diary (due to dialysis) but I find it helps.

[Sue]

Interesting Rain, I have been having treatment which was meant to help prevent my reflux, it didn't work, next thing to try is botox injections into my bladder ( I did ask my urologist if he could use any left over on my face  )  If that doesn't work he is suggesting an op to enlarge my bladder using part of my intestine. I am really interested in hearing about your experience. I am pre-dialysis.

[Rain]

Sue
Send me a private messages of any questions you have.  I had the surgery done 20 years ago at age 8 but I remember it clearly since it was a major surgery.  I'm sure the technology is better these days.  It was very risky back then.

[okarol]

Jenna also had the bladder augmentation surgery (using bowel material.) That was about 7 years ago. She doesn't have mucous much, it's not an issue at all.
You may want to read about the procedure here (it's directed toward pediatric, but Jenna had it done as an adult.) http://www.ucsfbenioffchildrens.org/education/bladder_augmentation_surgery/index.html
It was required for her to be eligible for a transplant.
One interesting part I read refers to self-cath:
Will my child have urinary tract infections after the surgery?

For unknown reasons, some children are particularly prone to urinary tract infections after bladder augmentation.

It's important to differentiate between bacteria in the urine and an infection. Children who catheterize normally have some bacteria in their urine because they're constantly introducing a foreign object — the catheter — into their bladder. This is not a problem so long as the urine is emptied out of the bladder every three to four hours. If the urine looks cloudy or dark, simply increase the frequency of the catheterizations to every two hours for a few days and try to increase intake of fluids. Usually, the urine will clear.

However, if your child develops a fever, lack of appetite, stomach cramping, back pain and is generally not feeling well, there may be more bacteria than normal. In this case, your child may need to have a urine test and possibly a course of antibiotics. If you notice these symptoms, your primary care doctor or a doctor from Pediatric Urology should evaluate your child immediately.

[Sue]

Thank you both

[MomoMcSleepy]

I've been self catherizing myself for over 23 years since the age of 5.
I use a clean catherater every time and I wipe myself with Benzallkonium Chloride Wipes (http://well.ca/products/pdi-benzalkonium-chloride_16837.html)

Also I use a good lubricating jelly like Muko gel and it helps reduce infections.  I was getting infections even with all this, every 3-4 months.   What I found helped was a probiotic that is formulated for UTIs.   Since I started taking it I haven't had a UTI in 9 months.

I cath every 4-5 hours even though I'm on dialysis to make sure my bladder is empty to reduce infections as well.  I also have to irigate my bladder once a week since part of my bladder is rebuilt using my intestine.  Diary tends to also increase the amount of mucus I produce so I am light on the diary (due to dialysis) but I find it helps.

I used to irrigate, but when my syringes didn't get covered by insurance anymore, I stopped.. I emailed my urologist the other day to ask about it, but he never answers me.  I asked about it last time I was in the hospital, but the resident was really cryptic about it and told me a story about flushing a toilet,  I thought he meant yes, irrigate, but did not get a straight answer.
I used to have to re-use the syringes.  Is that what you do?  How do you clean them?  How many times can you re-use them?

[MomoMcSleepy]

Interesting Rain, I have been having treatment which was meant to help prevent my reflux, it didn't work, next thing to try is botox injections into my bladder ( I did ask my urologist if he could use any left over on my face  )  If that doesn't work he is suggesting an op to enlarge my bladder using part of my intestine. I am really interested in hearing about your experience. I am pre-dialysis.

Sue, me, too.  I had an augmentation using my sigmoid  colon at the age of 15, I also remember it pretty well.  I know that you can get colonized bacteria, etc., using the intestines there.  You have to weigh the pros and cons.  I have a lot of mucus, less now of course than when I first got it.  I also have a urinary diversion.. PM me too, if you like.. Warning--supposedly when they out in my bladder, they detached my native bladder from my ureter, the re-attached , and scar tissue developed from that, and that is why my kidney is failing, from the blockage.  So, have your urine flow out of the kidney into the bladder checked every so often so you don't have more trouble..  No one checked me, I had no idea that could happen (and I don'tthink it always does, so it's not a reason to not have it, I don't think.). Ask the doctor about adhesions from the surgery, mention that you know someone who had a partial blockage from that.

[Sue]

There's so much to think about isn't there! I am sick of having 'stuff' done to my bladder  which never seems to help, I had my ureters re-implanted a couple of years ago which was meant to help stop my reflux, and actually did for a while,I've had ureteral stents 5 times too, I've been wearing patches to 'relax' my bladder for the last couple of months - I am now covered in red blobs where they have been cos I'm now allergic to them !! so I'm taking pills instead, tests have shown that the medication (Oxybutynin) has made no difference, hence the next planned treatment of botox injections. I'm seeing my urologist at the end of May to discuss options and will certainly ask him about adhesions etc. The reflux is the reason for my kidney failure and I know it's important to get it as much under control as possible, esp if I am ever to get a transplant in the future, my Gfr is 12, The surgery seems so major tho....

[MomoMcSleepy]

Well, it is major surgery, but if you get a transplant, and your bladder is still small and urodynamic studies show that  pressure from your bladder is contributing to reflux, then that threatens any new kidney, too, so it is worth it. 

update--  My urologist thinks that I have colonized bacteria in my kidney, and that when I get run down, I am getting kidney infections not from introduced bacteria necessarily (though  that happens) but from already existing bacteria in my kidney that sort of takes advantage of my weakened state.  I feel really sick and get a sore flank when I stay up too late, and get more symptoms over the next few days.

Good luck, Sue!  And I bet the surgery is done even better now than it was in 1995 when I had it, and your outcomes will be great (just watch the adhesions, something I  never thought of, though now I think, "Duh, Mo").

[MomoMcSleepy]

My daughter has to self-cath every 4 hours during the day. She uses a new catheter each time. We are paying for them and it is not cheap. She still get infections and with only 14% function remaining in her transplanted kidney, we worry that these infections will knock out what she's got. No one has recommended any solution to this besides prophylactic antibiotics. They say this is common with self-cathing and is to be expected. I would love to find an answer to this. She has been cathing for 10 years.

I have also seen ads for free catheters for patients on Medicare - I found this online:

Medicare programs allow 200 intermittent catheters per month without additional medical documentation.

Medicaid programs typically allow 120 intermittent catheters per month without additional medical documentation.  Note: Benefits vary by state Medicaid plan.

Other insurance coverage varies by plan, and benefits must be verified at the time of intake.

This is a link to that site, but there are others: http://www.intermittentcatheters.com/catheters-medicare-medicaid.htm

I am doing better using a fresh one each time.  I am also washing my hands twice--once to handle supplies and prep them, then again right before cathing (away from home am using alcohol).

Also, I am washing the site, which I wasn't doing because it's hard with the ostomy bag. I've been cathing consistently for 17 years, and did it on and off for years before that, and was taking a few short-cuts that probably introduced bacteria into the process.  Also, I hate peeing at work or in restaurants, etc., it is filthy!  How is her technique?  Maybe she should review it.  I read about a guy who opens the catheter at both ends, and inserts it without touching it (holding the package around the tube).  Of course, when I tried it, I dropped one of my precious catheters into the toilet, but it's worth a try.   

I can't afford to buy them right now.  I buy some, and also have to buy extra ostomy bags, plus all the meds that aren't covered, and copays, and this stupid house messed up my budget.  I know it's important, so I'm trying to figure it out.  Maybe I need to start charging things again, but I stopped usuing credit cards a few years ago and am still paying the last one off...

[Rain]

I used to irrigate, but when my syringes didn't get covered by insurance anymore, I stopped.. I emailed my urologist the other day to ask about it, but he never answers me.  I asked about it last time I was in the hospital, but the resident was really cryptic about it and told me a story about flushing a toilet,  I thought he meant yes, irrigate, but did not get a straight answer.
I used to have to re-use the syringes.  Is that what you do?  How do you clean them?  How many times can you re-use them?

MomMcSleepy-  sorry for taking so long to reply, I was busy with life the last few weeks so I haven't been online.  I haven't reused syringes in 7 years.  I buy fresh ones and use them once a week.  When i was irigating daily when as a child, my parents use to clean out the syringes once I was done with them and make sure they were dry.  My cathethers are the only things covered by my insurance and only 80%, the rest i  buy out of pocket.   I put around 50 dollars a pay aside for "medical"  to spend on my medical supplies when needed.  So it doesn't seem like an expense when I do need to buy stuff. 

[MomoMcSleepy]

Thanks, Rain.  I think that it's ok to reuse syringes a few times, if you take the syringe apart and dry it out, and don't use alcohol, it's bad for the rubber stopper.  Every hospital is different.  It seems insurance covers syringes, but I'll have to buy sterile water. 

My urologist was going to send me handouts on different catheter cleaning techniques.  He told me some use bleach, some alcohol, some use a microwave....he didn't want to tell me the wrong steps, so he said he send me handouts.  2 weeks later, I got a handout on female catheterization.  At first I was mad, thinking it was just a mistake, but then I realized after calling and speaking with the nurse that at the very end of the handout, where it says that in a pinch you can wash them out with antibacterial soap and water, that is the ONLY method that U of M has to recommend to me.  The nurse ended up sending me 60 "sample" catheters from the distributer to tide me over til my insurance is straightened out.  Hmmm...it was a frustrating and confusing time.  I think soaking in a bleach solution after washing and drying them out worked ok, but it made the catheters cloudy and sticky, and it's best if you can keep them in the freezer,  they don't last indefinitely like this.

I am in a little trouble and am in the hole every month.  In a way I put money aside through my flexible spending account, but I only have a few hundred dollars left until next March.  I just have to get my finances in order, but every time I cut something, another expense takes its place.  That's life,  I guess.