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Thread: Dialysis choices

  1. #31
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    Thanks for the update, Pete. I am glad that you were able to have the trip to Portugal and that there might be some options to get a kidney. Your son's girl sounds sweet & kind. I think that the kidney can fit if the body size is similar.
    Keeping you in my prayers ♡
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  2. #32
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    Went to a Pre-dialysis meeting yesterday. There were nurses discussing various options and patients telling their story.
    I was already 90% certain that I would choose Automated Peritoneal Dialysis (Performed EVERY night, at home, through the stomach) if I don't get a transplant first.
    I had already done lots of research so didn't find out much new info, but having the patients there to tell their own story and answer questions was helpful.
    Unfortunately the few new bits of info I learned was a bit negative -
    Firstly, if I was to receive a kidney and it failed, the remaining kidney function I have would drop and I would have to go on dialysis immediately. I never thought of this and just presumed that if the transplant wasn't successful my kidney function would be the same as before the operation.
    Secondly, my healthiest potential donor is my son's girlfriend. She is happy to donate and understands the slight risk and likely pain post op. But when I spoke to a transplant about my potential donors (Father, wife and son's girlfriend) she mentioned that they're not as keen on having donors from young women who haven't yet have children. Not because there would be any issue in getting pregnant, but the birth itself is stressful on the mother's body. This was the first time I had heard this and all the literature I have states that pregnancy is not effected by having one kidney.
    Obviously I want my son's girlfriend to know all the facts and then make an INFORMED decision. My wife seems to be ruling my son's girlfriend out as a potential donor and I'm concerned that she might persuade her not to donate, rather than letting her make her own mind up.
    Thirdly, the Automated Peritoneal Dialysis that I have chosen if I can't get a transplant early enough isn't an option until I've done Continuous Ambulatory Peritoneal Dialysis. This means that I would do dialysis through my stomach 4 times a day EVERY day for 3-6 months.

    There was some good news though -
    Firstly, although my wife has incompatible blood group. With modern techniques there is a slim chance the our antibodies might be compatible and she could donate to me.
    Secondly, although the idea of having dialysis 4 times a day, every day is daunting, one of the patients showed us him having an "exchange" (the dialysis procedure) and he didn't look to be in any discomfort.
    Diagnosed April 1995

  3. #33
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    I am so sorry, Pete, that you need to face those very hard decisions.

    Are you also on a transplant list ?

    In Israel almost everyone signed on a card for organs donations. Each one wrote what he will be willing to donate, in case... some are even willing to donate their whole body to med school. I signed it few years ago, willing to donate my kidneys or so, but I doubt they will use mine. We have many young and healthy people dying here, soldiers and in terror attacks and sometimes there are stories how an organ from a dead soldier saved the life of a palestinian girl. But since its politics almost, I will be back on topic.

    Is there something similar in the UK ? If you are on the transplant list will they call you if they just have someone who died and can fit ?
    How urgent is it now for you to go for it ? Do you need to do some tests before ? When my sweetie was a candidat for transplant they sent him to many tests, many were to check his heart.

    Keeping you in my daily prayers. Please update us.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  4. #34
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    Hi Alysia,
    I am not on the transplant list (for a deceased donor) because my preference is from a living donor for a few reasons (hope that doesn't sound like I'm being too picky).
    The advantages of living donor are numerous -
    1. Plenty of time to do many tests on the donor to check the health of the kidney and compatibility.
    2. A date and time would be set for the removal and transplant. This is important as it means the surgeons will be wide awake and prepared. A deceased donor can happen at any time meaning a surgeon may have had little or no sleep.
    3. Kidneys are the last organ to be removed from a cadaver. Not only does this mean the kidney is slowly deteriorating as other organs are removed, but they often get damaged whilst other organs are removed. They then need to be repaired as quickly as possible.
    4. I have bleeding problems and take warfarin. This means I really need a planned date to prepare my blood, rather than a phone call telling me I'm going into surgery in a couple of hours.
    5. Living donor kidneys tend to start to work immediately and last longer.
    6. If I can find a living donor, it means I free up a space for someone else on the transplant list.

    You ask "How urgent is it now for you to go for it ?"
    That is the Million Dollar Question!
    You are not usually considered for transplant until your kidneys are down to 15%. Mine are 18% and have dropped to 14% on occasion, but seem to have stabilised at 18%. Many patients have a steady decline in kidney function and it can be predicted when they will reach 15% or less. I am different. My function dramatically drops, then stabilises (sometimes for many years), as you might have guessed, this coincides with WG relapses/flares and periods of remission.
    I have been in remission for about 6 months. If I knew that I would stay in remission for many years it would be likely that my kidneys could hold up just as long. But we never know when the next flare/relapse will be. Not only would a relapse/flare damage my kidneys to the extent that I'd need dialysis/transplant, but even a simple cold or virus could be enough to damage them.

    Until I went to the meeting a couple of days ago I thought it would be better to have a transplant too early (i.e. before I actually need dialysis) than too late (after I've started dialysis), because transplants are more successful done before you need dialysis. But when I found out that a failed transplant would result in my remaining kidney function ceasing (and therefore requiring immediate dialysis) I'm not sure whether to wait.

    As for dialysis, there is not an actual percentage of renal function that dictates when you should start dialysis. Some people have strong symptoms of kidney failure at 20% function, others can go as low as 5%. I'm certainly suffering with many of the symptoms (worst one being exhaustion), the only thing holding me back from pushing through an immediate transplant or going on to dialysis immediately is the fact that my symptoms may not all be down to kidney failure and therefore transplant or dialysis may not improve my health by much when I will still have other problems (W.G., heart failure, lung problems, etc, etc). I wouldn't be too happy doing dialysis 4 times a day, every day and not feeling an improvement in health.
    Diagnosed April 1995

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    some are even willing to donate their whole body to med school
    I have considered donating my body to the University of Washington med school simply because I have so many odd things wrong with me. The only thing that has stopped me is that I don't think you have any control over how your body is used once it is turned over to them. I would hate to simply be hacked up by first year students trying to figure out where the heart was located. I would want to have them analyze all my problems and give a report to my wife or kids. I (they?) would be particularly interested in how the damage to my phernic nerve came about. That is a total mystery.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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    Gilders,I am so sorry to hear you are having to go through all of this. So many decisions to make. Hopefully your sons girlfriend will donate. I would have her talk to an obgyn about the possible effects of her getting pregnant.
    You certainly have done your research. I can see where you would rather it be a living donor, there are to many "ifs" the other way. I really hope you don't have to do dialysis 4 times a day.

    I have on my drivers license that I am an organ donor. I plan on being cremated so if they is anything someone else can use to live..I won't need it. But I was wondering if people with an AI disease if that matters about donation. Like I am sure no one would want my lungs !
    Life isn't about how you survive the storm, but how to dance in the rain !

  7. #37
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    It's so pleasing to hear that people are willing to donate their organs after death.
    I think there would be many willing people, but many just never get around to filling a form in or simply ticking a box so the right people know their wishes of donating.
    Diagnosed April 1995

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    One of my doctors told me that no one won't take any of my organs for donation because of my health issues. They won't take my blood either. I can understand that my damaged organs would be poor choice but if I had a kidney with 15% function and could get a kidney with 30% function it would seem a step up, but not if it gave me GPA or other issues.

    Has anyone been told they are not a candidate for organ donation?
    Knowledge is power! Wisdom is using it to make good decisions!

  9. #39
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    Quote Originally Posted by drz View Post
    if I had a kidney with 15% function and could get a kidney with 30% function it would seem a step up, but not if it gave me GPA or other issues.
    Even a very healthy kidney, let's say with 100% filtration ability, will significantly drop in efficiency as soon as it leaves the body. Therefore only very healthy kidneys are removed from living donors. The number one concern for drs (at least in the UK) is the donor's health and rightly so. So they would not want to leave a donor with one kidney unless the remaining kidney is very healthy. They will always tests both kidneys and the donor always gets to keep his/her's best kidney.
    Diagnosed April 1995

  10. #40
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    Thank you, Pete, for the detailed explanations. I understand now why alive donor is better.
    You have multiple considerations to take into account all at once... not an easy mission to say the least. Its good that you can research it all in advance. You are becoming THE expert.

    I pray that God will provide the best option for you, this way or another.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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