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Thread: Dialysis choices

  1. #21
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    They cant really tell the life expectancy for sure. Look at us, Pete, most of us were not supposed to live according to the literature but we are still alive & kicking....
    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. #22
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    A few years ago they started an experiment in Canada using pig kidneys to transplant in people with diabetes. I get this type of news since my mother died from kidney failure caused by diabetes. Most of her siblings did too and my sister and I and my sister both have diabetes.

    Pig organs are the most similar of domestic animals to people and skin has also been used for emergency care. The goal of the experiment was to find out if this was a viable resource due to shortage of people kidneys raising pigs for this purpose could solve the shortage problem if such treatment was effective and feasible. The question was whether the drugs we take like AZA and MTX would harm the body more than damage caused by failing kidneys. I wonder if the experiment is still going and what the results are so far?

    I did some checking and found this article:
    http://www.medicalnewstoday.com/articles/269738.php
    Last edited by drz; 05-05-2016 at 08:09 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

  3. #23
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    Just wanted to let you know, gilders, that I keep you in my thoughts & prayers. Here for you. Anytime you feel like.
    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. #24
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    Definitely good news, Pete! I hope those blood tests keeping going in the right direction! Other than the kidneys, how have you been feeling?
    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....

  5. #25
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    Hi all,
    I've had a busy couple of days, so apologies for long post.
    I had the pre-dialysis team visit on Thursday and my Vaculitis/Wegener's appointment, Rituximab infusion and echocardiogram on Friday.

    The gentleman from the pre-dialysis team was very friendly. To be honest, I didn't learn much new information as I've been researching a lot online. What I did learn was a little disappointing. I was hoping that I could postpone dialysis until I began to feel so ill that the benefit of dialysis out weighted the negatives. But the pre-dialysis gentleman explained that delaying it would not only cause me to feel more ill, but would actually cause other permanent damage/problems due to kidney failure.
    When going through the choices he said that Peritoneal Dialysis (PD) offers the best results. I asked if PD was better than daily Haemodialysis (HD) and he replied that they don't offer daily HD treatment. He also went on to explain how the dialysis at hospital is really struggling to cope. He went on to mention that some people are only having dialysis once or twice a week. I'm concerned that patients are only having dialysis once or twice a week not for their benefit, but because they can't fit them in as often as what would be ideal.
    My main issues between choosing HD (bleeding risk and poor veins) and PD (infection risk with being immunosuppressed), were only answered with "we wouldn't know until we tried". I know nothing can be guaranteed, but I'd like to know what is the most risky in my circumstances, but no-one will commit to an answer.

    My Rituximab infusion went well ONCE they managed to get a cannula working. They tried a couple of different style cannulas in different areas and I've been left badly bruised. I really can't see how I'd manage Haemodialysis when my body won't even accept small cannulas. I am definitely thinking I'll have to go on Peritoneal dialysis, even though it's not recommended for immunosuppressed and people with problems with bowel movements (like me).

    During my appointment for Wegener's check up we discussed my kidneys. The doctors thinks that as long as my heart tests come back fairly good, I should be ok for transplant in about 6 months. This was good news as I was thinking it would be 8-9 month before I'm ready. My aim is to avoid dialysis and get a transplant first. My wife has offered her kidney to me, but it is early days and although unlikely to be a match, she is offering to "swap" with another couple. The next time they will try match couples is October which is a little too soon for me. The next run after that would be January.
    Therefore my hope is either that my wife's kidney is a match and I can have the transplant in 6 months, or we manage to get a "swap" in January. All this, I hope, happens before my kidneys fail to the extent that I need dialysis.

    Apart from being quite stressed at the moment, I feel well enough that dialysis would actually be detrimental to my daily life. I also feel that the risk of a transplant operation wouldn't be worth the slight improvement the new kidney would make me feel.
    BUT if I wait until I feel SO ill that I want to go through with dialysis or transplant, I would be at more risk of the transplant not being successful or organ damage from delaying dialysis.
    Diagnosed April 1995

  6. #26
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    Dear Pete.
    Thank you for the detailed update. Not an easy time for you, to say the least.
    Thanks God for another rtx. I am glad you were able to have it after all. Weggies veins become tough to handle over the years. I saw it with my beautiful Phil. They poked him so much, and it was complicated to set the line for plasma pheresis and to keep it working. So in my humble opinion, dialysis in hospital will be better in case of stubborn veins.
    I have a weggie friend on facebook who goes to dialysis 3 times a week in an outpatient clinic. From his reports it sounds comfortable enough.
    We also know few weggies who have kidney transplant. One as a kid, age 10. Also we have Rebekah in this forum, if you want to send her pm and more on facebook, if you will want me to connect you with them. The change is not little but great. They are as good as new, literally.
    I understand how scary all these might be. But you have a good hope for better days.
    Hang in there. 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.

  7. #27
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    Oh, sweet gilders, I am so sincerely praying for you. Such choices. You have been through SO much and it seems everything that is supposed to help you is also a challenge. How does one make such a decision? I can't even imagine what that would be like, nor do I know which one I would choose if I was in your shoes!
    Isn't it lovely that they respond with "we don't know until we try!" I don't like that. I want to know that you will be OK.
    Sending you all my love and prayers.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

  8. #28
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    Good analysis of your issue. I have friends who do their dialysis at home. Less risk of infections there if you keep sterile technique. You might have to switch from one form to the other as your health condition necessitates. I have only seen good news fro people who had transplants. The one down side is having to do pentamadine or equivalent treatments due to suppressed immune system since transplant recipients have to also take immunosupressants to avoid rejection of the organ but that could be a plus in help control the Wegs..
    Knowledge is power! Wisdom is using it to make good decisions!

  9. #29
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    Here is another one to cheer you up gilders, and others around... I hope the link works
    https://m.facebook.com/story.php?sto...47644198825411
    If not, it is on facebook page of a weggie friend who is searching for a kidney:
    https://m.facebook.com/Amberskidney/
    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.

  10. #30
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    I've just returned from my holiday to Portugal. It was a very close call as whether to go or not. I must have picked up a virus immediately after my last RTX infusion, which was a week before I was due to fly out to Portugal.
    Whilst on holiday my wife received the results from her blood test. Unfortunately her blood is not compatible with mine, so we've failed at the first stage of me receiving a kidney from her . She is still willing to swap with another couple if one can be found.
    My dad is willing, but I'm not sure if that will be a good choice as he's fairly old (64).
    My son's girlfriend has offered. Her blood type is O so it's compatible with my A+. She's also young, doesn't drink or smoke and is fit and healthy (as far as I can tell). Obviously there's a lot more compatibility tests than just the blood group, but I'm hopeful it's a match. Half of her family are supportive and the other half aren't. I hope she doesn't change her mind.
    Diagnosed April 1995

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