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Thread: Dialysis choices

  1. #41
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    Quote Originally Posted by drz View Post

    Has anyone been told they are not a candidate for organ donation?
    I signed the card of organ donations in a weired situation: I was sitting on the train with 3 ladies who turned out to be nurses who are working in transplants. They convinced me to sign the card, although I explained about my wg. They didnt say that they will not use my kidneys but either that they will. They say that signing the card gives me priority if I will need transplant. So I am not sure... I dont mind to give one kidney now if it useful to anyone. I dont have wg in the kidneys. Gilders, my blood type is AB minus....
    Although I underatand that it is better not to take mine...
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

  2. #42
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    Hi Gilders. I saw this article and recalled that my wg dr. Just told me that they treat with it.
    Check it : Researchers find drug that could halt kidney failure ? Medi Cures
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

  3. #43
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    Hi Alysia, I somehow missed your previous post (#41). I like the idea that in your country if you sign up as an organ donor, you get priority if you need a transplant. It only seems fair that people willing to donate get priority for receiving.
    Thanks for the info on abatacept. I'm not sure if it would help my renal failure, but it looks like I wouldn't be able to receive it anyway - NICE (National Institute for health and Care Excellence) dictate which drugs the NHS can use and for what purpose. Their website looks like they only authorise it for use for Rheumatoid Arthritis after previous treatments haven't been successful.

    I had an appointment with my nephrologist just a few days ago. It did not go well. My nephrologist has told me that the NHS will not fund tissue match tests for all my potential donors as it's too expensive. He thinks the best donor will be be my father (even though he's 64). I really wanted to have a living donor transplant before I went on dialysis as it has the best success rates. My biggest disappointment is that my Dr thinks I'll be on dialysis before I get the transplant. This is not because he thinks my kidneys are rapidly deteriorating, but because the process of transplantation from start to finish takes such a long time on the NHS. It can take about a year just to do the matching tests and if my dad isn't suitable, I'd have to start all over again. The longer I'm on dialysis the less chance the transplant will be successful for many years, plus the more chance of me being declared too high risk (as my health will deteriorate on dialysis).
    I am so annoyed that it has been left so late to begin testing potential donors when I first told my Dr I had potential donors many years ago and my wife has reminded him at every appointment since.

    Alysia, when you wrote "Gilders, my blood type is AB minus....
    Although I understand that it is better not to take mine..."
    If that was an offer of donating a kidney to me then I can not express how grateful I am for your offer. You really are too kind and generous. You are right about the blood group being incompatible. As I've previously mentioned, my wife is incompatible also. There is a way around it using plasmatheresis and extreme immunsuppression, but it only happens as a very last resort.
    Considering how long it takes for the tests to be done under the NHS and the fact that you would be a last resort back up, realistically I would either have being matched with one of my current potential donors, too ill for transplant due to too long on dialysis, or unfortunately, dead.

    I just need to prove my nephrologist wrong and keep hold of my remaining 15% function until transplant date.
    He has already requested an appointment with the team that do the surgery for a Peritoneal catheter and a Vascular surgeon to create a fistula.
    The NHS is at breaking point where I live. For example, the vascular surgeon will first see me sometime this Fall/Autumn, then I'll need to wait for an appointment for my veins to be mapped. When everything is set up for surgery, there is a further 6 months wait for the operation!

    My cousin who lost her mum last December had a miscarriage last week and my stress levels are soaring at the moment. My mum has her mastectomy on Tuesday, after 12 awful weeks of chemo. But fortunately her scans came back good the other day, so it looks like she's free from cancer at the moment.
    Diagnosed April 1995

  4. #44
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    Dear Gilders.

    Yes. If my kidney can be useful I will be glad to give one to you or another friend or relative.

    I am so sorry for all the stress that you have to deal with in too many issues. Indeed overwhelming. Thank you for sharing with us. At least you have good news that your mother is clean of cancer. Thanks God.

    I am not sure if being on dialysis before transplant means always worse outcomes... I hope it is not. From what I understood from friends on facebook, it is not an axiom. Also I didnt see friends on dialysis getting worse. I might be wrong. Just my impressions.

    It sounds so frustrating to deal also with your health services, having their own time and thinking about money. Such a shame. We see it all over the globe. (Not sure, but it seems to me that not in Australia.... ).

    If that med, Orencia (thats her name in Israel) can truly help your kidneys maybe the meds company will be willing to give it for free ? Worth asking.

    Hang in there. I understand how rough it is all and I keep you in my daily prayers.

    St. Padre Pio said: pray.hope. and dont worry.
    I hope it can bring more peace to your soul.
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

  5. #45
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    I am surprised, but happy, that the renal section on this forum is very quiet. This suggests that not too many forum members have kidney problems, which is great!

    Anyway I thought I'd update on my situation with dialysis and transplant.
    Towards the end of summer last year it was decided that I would have both Haemodialysis access (fistula) and Peritoneal Dialysis access (catheter in stomach). It was then decided that as I was initially starting peritoneal dialysis, it wasn't worthwhile to have a fistula as back up.
    At the meeting before my catheter surgery, I said I'd decided not to have any dialysis. I wanted to cope with my symptoms rather than wear out my peritoneal lining. Plus considering transplants are more successful done before dialysis has started, I thought postponing dialysis would be best.
    It was decided that between my dad, wife and daughter-in-law, it should be my dad that went through to the final stage of donating.
    It's now almost April and my dad is still having tests and I'm still due tests and various appointments. The process is ridiculous slow.

    The good news is that my kidney function has been stable for about 10 months now. I really don't know if I should go through with a transplant at the moment. I don't want to have one too early. Donor kidneys don't last forever, so I'd rather make use of the donor kidney when I REALLY need it. But the risk of turning down a transplant would likely end in a scenario where my kidneys fail further and I'd have to start the transplant process from the beginning again. As this is likely to take over a year, this would mean I am on dialysis for over a year before I finally get the transplant.
    Me and my father will carry on having tests and if my kidney function deteriorates, my mind will be made up and transplant will go ahead. If we get to the end of all the tests and my kidneys are still stable, I'll have a big decision, whether to have the transplant or not.
    Diagnosed April 1995

  6. #46
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    Thanks for the update, Pete. I am glad that your kidneys are stable and that your father will prob be able to donate... tough decisions to make.. I know few weggies friends on facebook with kidney transplant who are doing good years after the surgery.. so there is a hope. Keeping you in my thoughts and prayers.
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

  7. #47
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    Glad to hear a pretty positive report, Pete! I hope you won't need a transplant, but what a blessing to have your dad as a possible donor. All the best to both of you!

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  8. #48
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    I found this one to cheer you up gilders and the others...

    https://troab.com/worlds-first-bioni...ust-two-years/
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

  9. #49
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    Hi Alysia. Thanks for this. I did come across it last year (possibly Blake told me?).
    It really does sound very promising. Probably too late for me at the moment, but hopefully by the time my donor kidney "wears out", it might be available to me.
    I'm trying to keep as fit and healthy as possible ready for the transplant. My kidney function is fluctuating between 14-16%. They only perform transplants when your function is consistently 15% or less. My kidneys are real fighters and refuse to stay below 15%.
    I'm enjoying the new house and making good use of the garden, growing fruit and veg, whilst keeping as fit as possible.

    My main problem is severe joint pain (rheumatism ). I had my final rtx fusion 5 months ago and been off pred for about 4 months. I hate the side effects and weight gain from pred (I already lost 7kg), but I'm in so much pain without it.
    Diagnosed April 1995

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  11. #50
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    Hi Pete. Thanks for the update. I am glad that you enjoy your new house and that your kidneys are stable after all. As for the joints pains, I think that many of us cant make it without any pred. Sorry to say so. Also 5 months after rtx might be the time to prepare for the next IV and your joints are just telling you so. Hang in there. I keep you in my prayers.
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

  12. Likes Jaha liked this post

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