I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: SweetyPie on January 29, 2018, 05:56:20 PM
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So it hit the date. Its been one year that Ive been on hemodialysis. 7 years on dialysis total. I am in a wayyy better place than I was last year. Bad infection. I couldnt walk much lost about 12 pounds at the hospital and also lost all my hair on my head. It feels good to have energy and walk up the stairs with no problems. Im happy... and worrisome at the same time. I hear from doctors and nurses all the time that i need to get a fistual :( im really not up to get one. With me working towards my transplant process I feel its too much at the moment. I heard the catheters last about one year. Does anyone else have a catheter and how ling did yours last?
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I have a catheter. Its been at least two years. I've not had any problems and I will always only have a catheter. My blood transport system will not handle any other type of dialysis. I am way too old for a transplant but I'm pretty sure that even if I were a candidate I would not have one. Too much confusion, too many antirejection drugs, too big a disappointment if it does not work etc.
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Hello Aaisha.Dar,
I have a chest-cath tesio line and I have had it now for over three years and I am quite happy about it. I was told to take great care and keep an eye on it at all times. No drop of water is allowed to come near it and my cath is not allowed to be damaged in any way whatsoever. Perhaps the reason why a fistula has been suggested, is because if anything goes wrong with a cath, there could be possibly much more trouble and the heart could get involved in a big way (at least that is what I was told).
Good luck and don't forget to keep an eye on your cath and take great care.
Best wishes from Kristina. :grouphug;
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Dec 6 was my year anniversary for my chest cath. I had my fistula created in May be had problems with it developing. Finally started using it only a couple weeks ago and still have problems with the middle section of it and have another fistula-gram scheduled for next Tuesday. Clinic wants me to have my cath pulled then but I am going to refuse until such times as I KNOW that this fistula is working fine. Some days it does, many times one needle fails to flow well enough and we end up using one side of the cath. I'm not willing to start skipping treatments because part of the fistula isn't working properly.
I love my cath, but it would be neat to be able to fall into the river or lake on a hot day this Summer!
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I am in a wayyy better place than I was last year.
Glad to hear about the improvement!
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Good luck with the fistulagram. I had a problem with the venous return, but the fistulagram cleared me and it turned out that a new buttonhole location solved my problem.
So, hang in there ... you may get good news, or an easily effected repair.
Smart move hanging onto the cath, especially since you will have a definitive answer in a week.
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Hello Aaisha.Dar,
I have a chest-cath tesio line and I have had it now for over three years and I am quite happy about it. I was told to take great care and keep an eye on it at all times. No drop of water is allowed to come near it and my cath is not allowed to be damaged in any way whatsoever. Perhaps the reason why a fistula has been suggested, is because if anything goes wrong with a cath, there could be possibly much more trouble and the heart could get involved in a big way (at least that is what I was told).
Good luck and don't forget to keep an eye on your cath and take great care.
Best wishes from Kristina. :grouphug;
My daughter had her chest cath for over three years as well, before she got a transplant. Like Kristina above-she was extremely vigilant and took exceptional care of it. Infection has a direct pathway into the heart muscle-so you have to practice perfect aspetic technique :)
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With the help of God, i would say I am extremely careful with this cath. Even though it hurts to pull off the dressing i ask for the extra strength tape because the other one just comes off. I am also a germaphobe so it just my daily routine to bathe every other day and change my undershirt. Its my plan to keep it until my transplant. I just dont have the guts to tell my doctor no.
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You will do just fine :)
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i ask for the extra strength tape because the other one just comes off. I am also a germaphobe so it just my daily routine to bathe every other day and change my undershirt. I
Consider asking for a Tegaderm. I know Fresenius requires an MD order because these cost $1.00 or so each instead of a few cents for gauze and tape.
"Germaphobe" and QOD bathing sounds oxymoronic. Many people shower or bathe daily; QOD is hardly pushing the cleanliness envelope.
If you want to shower, look into the Korshield (www.korshield.com) Very effective if used carefully.
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Let me correct myself. I dont bathe lol thats just sitting in your own filth. What I do is fill a smaller tub full of soappy water then get a cup and pour water onto myself until im squeaky clean. Then i get help to wash my hair while i keep a towel on my cath to keep it nice and dry. What does QOD mean?
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QOD is Latin for every other day :)
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I would "shower" everyday but since my blood pressure gets too low in dialysis days its nearly impossible to anything. Its safer to just do every other day with the exception if your changing your clothes daily.
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I love my cath, but it would be neat to be able to fall into the river or lake on a hot day this Summer!
Hello Charlie,
I love my cath as well, especially since it leaves my arms and hands free to continue learning how to play the piano.
I am not overly keen on swimming ... for me having a cath is just very much appreciated because it hopefully continues to keep my hands free ...
Good luck wishes from Kristina. :grouphug;
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Hello Aaisha.Dar,
I have a chest-cath tesio line and I have had it now for over three years and I am quite happy about it. I was told to take great care and keep an eye on it at all times. No drop of water is allowed to come near it and my cath is not allowed to be damaged in any way whatsoever. Perhaps the reason why a fistula has been suggested, is because if anything goes wrong with a cath, there could be possibly much more trouble and the heart could get involved in a big way (at least that is what I was told).
Good luck and don't forget to keep an eye on your cath and take great care.
Best wishes from Kristina. :grouphug;
My daughter had her chest cath for over three years as well, before she got a transplant. Like Kristina above-she was extremely vigilant and took exceptional care of it. Infection has a direct pathway into the heart muscle-so you have to practice perfect aspetic technique :)
Hello Xplantdad and many thanks for your kind reassurance.
I do hope Holly is doing well and I send you my kind regards from Kristina. :grouphug;
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Thank you Kristina. Holly is doing very well now. :)
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If you want to shower, look into the Korshield (www.korshield.com) Very effective if used carefully.
I use "The Shower Shirt" http://www.theshowershirt.com (http://www.theshowershirt.com) and it is wonderful. I have used several methods to get my daily shower in the past and as it turns out, this is for me, the best. It has a waterproof front zipper, a velcro neck closure, a neck tie off and an elasticised "belly band". :2thumbsup;
Consider asking for a Tegaderm.
My clinic uses only Tegaderm but I have experienced the silk tape and gauze at a clinic in Biloxi, MS. It was a FS clinic. Didn't care for it at all.
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Hello Lulu,
Please take great care. I was told that my chest-cath is there to provide me with my life-support-dialysis-treatment and I was also told that it would not be recommendable to take a shower/bath whilst having a chest-cath, as there could be a chance for a little water to "creep" underneath, with whatever I would try to protect my chest-cath. I was told by medics not to even entertain such a thought as it could severely compromise my chest-cath-survival chances.
Take great care and best of luck-wishes from Kristina. :grouphug;
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I was given the same warning as kristina. The first shower after they removed the catheter was, in a word, glorious.
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If you use a Koirshield or shower shirt, it helps to have a shower head on an extension cable so you direct the water rather than just stand under it. I was able to shower with a Korshield immediarely before treatment and never showed up with damp gauze.
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I was given those same 'Warnings' by my PD Nurse when I first started. Since I am a Retired Marine Mechanic, and we use some pretty handy chemicals, I asked repeatedly why couldn't I 'Seal' my site using something like Liquid Skin, or maybe some Liquid Plastic Tape (Available in various colors), Or Dip-It (Neat stuff to rubber coat tools). All work very well to seal out water. And all are virus and bacteria free. Solvents have got to be one of the most sterile things in the shop.
Nurse wasn't very happy with me. I was told most emphatically "NO" and "Don't even think about it".
Nurse doesn't appreciate a semi-serious sense of humor. Mine can be quite sick.
But I bet any one of the three would work well.
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Hello Lulu,
Please take great care. I was told that my chest-cath is there to provide me with my life-support-dialysis-treatment and I was also told that it would not be recommendable to take a shower/bath whilst having a chest-cath, as there could be a chance for a little water to "creep" underneath, with whatever I would try to protect my chest-cath. I was told by medics not to even entertain such a thought as it could severely compromise my chest-cath-survival chances.
Take great care and best of luck-wishes from Kristina. :grouphug;
The 4x4 Tegaderm topper covering the 2, 2x2 gauze pads covering the cath is waterproof. The shower shirt can be breached only at the neck if one is careless using the neck closure. The zipper is double closure and has a full length Velcro cover, top to bottom. The cath itself has been healed over for about 23 months so that it is now a part of my chest. After it heals and scar tissue takes over the opening where the "hose" goes in the chest and as long as there are no raw spots or tears there is not a potential for problems. If the clinic insists on using silk tape and gauze pads only instead of Tegaderm there is a great potential for problems. I don't represent the shower shirt or anything but I have used some unorthodox coverings in order to get a shower and feel human again.......this one works like a charm for me.
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Hello Lulu,
Please take great care. I was told that my chest-cath is there to provide me with my life-support-dialysis-treatment and I was also told that it would not be recommendable to take a shower/bath whilst having a chest-cath, as there could be a chance for a little water to "creep" underneath, with whatever I would try to protect my chest-cath. I was told by medics not to even entertain such a thought as it could severely compromise my chest-cath-survival chances.
Take great care and best of luck-wishes from Kristina. :grouphug;
The 4x4 Tegaderm topper covering the 2, 2x2 gauze pads covering the cath is waterproof. The shower shirt can be breached only at the neck if one is careless using the neck closure. The zipper is double closure and has a full length Velcro cover, top to bottom. The cath itself has been healed over for about 23 months so that it is now a part of my chest. After it heals and scar tissue takes over the opening where the "hose" goes in the chest and as long as there are no raw spots or tears there is not a potential for problems. If the clinic insists on using silk tape and gauze pads only instead of Tegaderm there is a great potential for problems. I don't represent the shower shirt or anything but I have used some unorthodox coverings in order to get a shower and feel human again.......this one works like a charm for me.
Thank you Lulu,
... but I still would not take the risk and dare to try it out. I still use a movable shower-head which I handle very carefully and around my chest-cath I only use a damp flannel, again very carefully. Of course, all that takes time, especially since I am ever so careful about it... Better safe than sorry...
All the best wishes and good luck from Kristina. :grouphug;
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Thank you Kristina. Holly is doing very well now. :)
Thank you Xplantdad for the update. I am very pleased to read that Holly is doing very well.
Thanks again and all the best and good-luck-wishes from Kristina. :grouphug;
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Kristina, I KNOW how extremely careful you are with your cath, but if it accidentally became wet, what would happen next?
Also, does the site ever become uncomfortable when you are asleep? Do you have to make sure, for example, that you don't sleep on your tummy?
You may remember that my mom had a cath for 18 months; I should have thought to ask her these questions!
Thanks for your replies. You are the poster child for how to keep a cath safe!
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Hello MooseMom,
I better not think about what could or would happen if my cath became wet (and hopefully I never shall find out) but I have heard that an infection etc. could possibly happen and since dialysis in itself is already a life-support, an infection at the cath-site could become life-dangerous, especially since an ESRF-dialysis-body can become a bit weakened over time. But a bit of regular exercise etc. can help a lot to keep the body as fit as is possible for as long as is possible ...
Fortunately my cath-site has never been uncomfortable during the day or night and I can fall asleep in the same way as I have done before dialysis.
What helps me a lot, is, that I always fasten my cath with a medical tape and that keeps the cath securely in its place and when I go for my next dialysis-session the medical tape is carefully taken off and after dialysis the cath is securely fastened with the medical tape again.
To be quite honest, I am very grateful that my cath has given me no problems so far and hopefully it continues like that ...
Best wishes from Kristina. :grouphug;
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What helps me a lot, is, that I always fasten my cath with a medical tape and that keeps the cath securely in its place and when I go for my next dialysis-session the medical tape is carefully taken off and after dialysis the cath is securely fastened with the medical tape again.
You dress your site yourself? What is "medical tape"?
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Thank you Kristina. Holly is doing very well now. :)
Thank you Xplantdad for the update. I am very pleased to read that Holly is doing very well.
Thanks again and all the best and good-luck-wishes from Kristina. :grouphug;
thank you for asking :) :thumbup;
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Thanks for the reply, Kristina! Very interesting!
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Thanks for the reply, Kristina! Very interesting!
Hello MooseMom,
I do believe that the medical "implementation" and medical "maintenance" etc. of a chest-cath has improved a lot over the years...
Best wishes from Kristina. :grouphug;
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Thank you Kristina. Holly is doing very well now. :)
Thank you Xplantdad for the update. I am very pleased to read that Holly is doing very well.
Thanks again and all the best and good-luck-wishes from Kristina. :grouphug;
thank you for asking :) :thumbup;
Hello Xplantdad,
Holly has been going through quite a lot and she has always kept up her good spirits and I have been keeping my fingers crossed for her and do hope she is continuing to do well.
Best good-luck-wishes from Kristina. :grouphug;
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What helps me a lot, is, that I always fasten my cath with a medical tape and that keeps the cath securely in its place and when I go for my next dialysis-session the medical tape is carefully taken off and after dialysis the cath is securely fastened with the medical tape again.
You dress your site yourself? What is "medical tape"?
Hello Lulu,
Only nurses dress my cath-site very carefully at both "ends" whilst wearing medical gloves. These medical gloves are completely disinfectant and only worn once and then thrown away ... and the medical tape I have mentioned is non-allergic and well tolerated when it is being used to "tape" the dressed cath-ends (access to dialysis) to the skin, in order to keep it well in place.
Best wishes form Kristina. :grouphug;
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The medical gloves are "clean", not "sterile". Sterile gloves come in sealed individual packs, and there is an extensive ritual to putting them on without contamination.
As to medical tape - several types - paper, paper w/extra sticky adhesive, silk. The later rips off the top layer of my skin, so I use paper extra sticky (3M Micropore Plus)
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I was told the reason an infection at the catheter sire is dangerous is because the catheter itself leads straight into the heart.
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The medical gloves are "clean", not "sterile". Sterile gloves come in sealed individual packs, and there is an extensive ritual to putting them on without contamination.
As to medical tape - several types - paper, paper w/extra sticky adhesive, silk. The later rips off the top layer of my skin, so I use paper extra sticky (3M Micropore Plus)
Hello Simon,
the medical gloves all the nurses use at "my" dialysis center are sterile and come in sealed individual packs and you are quite right there is an extensive ritual to putting them on without contamination and all the nurses always disinfect their hands completely and carefully before they proceed to open the individual pack and put the sterile gloves on. It always takes time and I am grateful that the nurses take such great care. If for example the dialysis-machine makes "a noise" and needs to be adjusted, the nurse adjusts the machine slowly and carefully with her/his elbow (which is quite an art in itself !) ... Let's hope it continues to be so very successful as it has been in the past ...
Best wishes from Kristina. :grouphug;
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I was told the reason an infection at the catheter sire is dangerous is because the catheter itself leads straight into the heart.
Hello GA_DAWG, it is quite true that an infection anywhere connected with the catheter is dangerous because the catheter itself leads straight to the heart. Of course it depends on the patient, how they deal with the situation. As for myself, I am much too interested in life to take any risks with my catheter and I am also determined to enjoy as many years in the future as is possible.
All the best from Kristina. :grouphug;
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Hello Simon,
the medical gloves all the nurses use at "my" dialysis center are sterile and come in sealed individual packs and you are quite right there is an extensive ritual to putting them on without contamination and all the nurses always disinfect their hands completely and carefully before they proceed to open the individual pack and put the sterile gloves on
I am impressed.
I have been to about a dozen clinics for hemo (I use NxStage at home, but do not haul it on trips), mostly Fresenius but a few DaVita oin various parts of the US, both as a catheter and fistula patient.
I have never seen any clinic use anything other than the bulk packed clean but not sterile gloves.
What center do you use, and what company runs it? It is interesting to see one exercising this extra level of care.
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I have never seen any clinic use anything other than the bulk packed clean but not sterile gloves.
Same here. Sounds more like a tape and gauze cover than Tegaderm.
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Our clinic uses the same gloves you can buy at Sam's. As often as they change them, they would spend all day going through a ritual with sterile gloves. They do use lots of hand disinfectant though. Of late, they have been using the regular paper tape, then for the last layer, a sterile band-aid. Still haven't figured out the band-aid, unless someone owns stock in the company.
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Hello Simon,
the medical gloves all the nurses use at "my" dialysis center are sterile and come in sealed individual packs and you are quite right there is an extensive ritual to putting them on without contamination and all the nurses always disinfect their hands completely and carefully before they proceed to open the individual pack and put the sterile gloves on
I am impressed.
I have been to about a dozen clinics for hemo (I use NxStage at home, but do not haul it on trips), mostly Fresenius but a few DaVita oin various parts of the US, both as a catheter and fistula patient.
I have never seen any clinic use anything other than the bulk packed clean but not sterile gloves.
What center do you use, and what company runs it? It is interesting to see one exercising this extra level of care.
Hello Simon,
Whilst I am posting my experiences and thoughts here on IHD, I have to say that I don’t report on all the catastrophies that I come across at my dialysis center and what I hear second hand – like for example when patients pull their chest-catheter-lines out and injure themselves falling due to low blood pressure. All patients are different and whilst I struggle to try and do my best I am only too aware of the very serious problems which can arise, no matter how hard one tries. There is no perfect center for dialysis, there is no perfect way of having dialysis, it is down to experience and a huge amount of luck and one has to be diligent at all times and this is difficult when one feels very much under the weather. It is a question of: it is easily said but difficult to do.
Best wishes from Kristina. :grouphug;
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My center doesn't use sterlie gloves is that something I should be concerned about? I have been on hemo for 1 year no infection thanks to God. I know all aboit sterile gloves and how they have to put it on. That would take forever of they always had to use it though
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Kristina - who runs the clinic that used genuine sterile glove? I'm wondering because I have never seen that at Fresenius or DaVita.
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NHS runs clinics and wards and only use sterile gloves on catheters and lines
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NHS runs clinics and wards and only use sterile gloves on catheters and lines
Are you talking about the real, individually packed sterile gloves that must be laid out on a sterile field and applied using the sterile glove ritual?
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NHS runs clinics and wards and only use sterile gloves on catheters and lines
Are you talking about the real, individually packed sterile gloves that must be laid out on a sterile field and applied using the sterile glove ritual?
There's a ritual? That's so funny. My clinic uses the boxed, clean gloves also.
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NHS runs clinics and wards and only use sterile gloves on catheters and lines
Are you talking about the real, individually packed sterile gloves that must be laid out on a sterile field and applied using the sterile glove ritual?
Yes, per pair (left/right) wrapped, but I only saw them use those withe catheters/lines, not fistulas.
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There's a ritual? That's so funny. My clinic uses the boxed, sterile gloves also.
As a matter of fact, there is.
The packaged is opened in a matter that the package itself is used as a sterile field. The gloves come folded (not bunched up like the gloves in bulk boxes), and there is a very particular procedure used to put on the gloves without touching any of the outside surfaces of the gloves. Gregorian chanting is optional. A video of the ritual is posted at https://www.youtube.com/watch?v=jqi6HD645oU. If this procedure is properly followed, the outside surfaces of the gloves have not been touched by anything other than a sterile glove surface during the process. Anyone not using this method is probably not following proper sterile procedure.
The gloves (often blue nitrile) that are bulk packed in boxes of 100 and dispensed like tissues and not individually wrapped are clean, but not sterile. My clinic uses these for everything - catheters, fistula, touching the dialysis machine, etc. I was asking because people often mistake those for "sterile" gloves.
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In Britain the rule tends to be: Use the wrapped, sterile gloves when touching wounds, catheter's, kneedling, etc to prevent your germs infecting the patient. All other time use the boxed (non sterile) gloves to touch patients to stop them infecting you!
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In Britain the rule tends to be: Use the wrapped, sterile gloves when touching wounds, catheter's, kneedling, etc to prevent your germs infecting the patient. All other time use the boxed (non sterile) gloves to touch patients to stop them infecting you!
That's on up on the US clinics. I've been to a lot of them, and never seen true sterile gloves.
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MooseMom, I know that while I had a catheter, they made it very clear I was not to sleep on my stomach, and of course went into great detail over the need to keep it dry and how if it became infected, the infection has a direct path to your heart. They first attempted a fistula with me, but it did not take, so they went to a graft. One thing I can say, from my experience, is it is much less draining than with a catheter. I was told that would be the case before the graft was done, and was pleasantly surprised at the truth in it. Another thing that really bothered me was the fact that where the catheter was placed, I could not drive because the seat belt harness came directly over the catheter.
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I still wear a seat belt even though it goes over it. I also put a ziploc on my catheter JUST in case I accidentally might get water over it. I'm ready for a transplant. Want to get going with taking more classes for school.