Waiting for a Donor

Hi everyone, Just found this site today. Been on dialysis for a year now and getting worse everyday. I am on 3 donor lists, but nothing yet. Being from a large family (5 siblings) you'd think one of them would be a match, but unfortunately none of them were for one reason or another. I am desperately seeking a donor ASAP. This dialysis is killing me slowing. I'm thinking of quitting dialysis but they tell me if I do, I won't be alive within a month or two. But the way I've been feeling, does it matter?

I don't know where or what to do next. If you can help, please do.

Thank you kindly in advance.

Nanci

12 Replies

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  • I'm sorry to hear that and will be praying for a donor soon.

  • Thank you kindly, I really do appreciate your prayers.

  • If you have a healthy sibling willing to donate a kidney, it can result in putting you at the top of a live transplant list. For instance, last year a healthy (age 50) friend donated a kidney so a mutual friend (age 72) could leave dialysis. The transplant center was able to set up a "transplant chain" involving 12 individuals across the USA, including these two. I believe there were 6 donors and 6 recipients, and the procedures were simultaneous. I first thought the 50 year-old donor was putting himself at extreme risk, but the medical literature indicates overall donor risk is quite low. I believe it is generally accepted that a kidney from a live donor is better than from a cadaver. Both donors and recipients must pass pre-transplant screening before the chain is put in motion. First step would seem to be checking with a nearby kidney transplant center.

  • That's the thing, none of my siblings are eligible donors. There's one reason or another, whether it be medicine or medical condition. So unfortunately, that won't work. That's what I was hoping for at the worst case scenario. But thanks for your thoughts.

  • I understand your frustration, I was on dialysis for 13 years before I got my last transplant in 2015, the wait times have become longer in some cases due to the amount of people that are being added to the list everyday.

    Hang in there!

  • I'm trying to Bert, but it's so difficult, thinking of 15 years if waiting, I just dont think I can do that for that many years. But I just don't have a choice. Thats whats so frustrating, not having choices.

    But I do want to thank you for your kind words and encouragement.

  • Nanci, Don't loose the faith. I was a living donor in 2015. My husband was on dialysis about a year and felt the same as you. Lots of complications. We changed to home hemodialysis which was much easier. Home peritoneal dialysis is also an option. There are sites that help people find kidneys. Look at A Kidney for Daddy on Facebook. If you could find a healthy donor even if not a match for you, there are paired exchange programs. Do everything you can to stay healthy as possible to be eligible for transplant. Prayers for you!

  • Thank you so very much for your kind words and your kind reply. I thought about home hemodialysis, but I've got RSD of my lower limbs and cannot stay asleep for more than an hour and an half at a time when I wake up and from the pain and need to walk around to walk off the pain in my legs. It's very hard for me to sit for 8 hours a day for the hemodialysis. I know you can walk around tethered to the dialysis machine, but it would be very difficult for me. I spent two sleepless nights debating what to do, and I finally decided to stick with the three days a week with the regular dialysis for the time being. I can always change my mind later on down the road. I am despartley looking for a donor for an exchange program at the least. Thank you kindly for the prayers. I very much appreciate it. Thank you for your response.

  • You can do 2-3 hours 5 days a week on home hemo. Don't have to do nocturnal.

  • Unfortunately, my condition calls for 8-10 hours, 7 days a week if I do home dialysis. Yes, it could be either day or night, but that's why I'd want to do it at night so I could have my days to myself. Just not worth it, I'd rather do 3.5 hours for 3 hrs a day at a center.

  • Thank you so very much for your words of wisdom. I will definitely check out that site you told me about. Hopefully that will give me some hope. Thank you for your time in replying to my post. I really appreciate it.

    Nanci

  • Thanks for the info Marcy. I'm going to the site you suggested on FB. I thought about home dialysis, but at the end of meeting the nurse and going through all the steps, and 2 sleepless nights, I decided against.

    I don't sleep through the night due to my RSD. I'm up and down all night and being thethered to the machine for 8-10 hrs just wouldn't cot it.

    I know I could also do it during the day, but to me I figured I'd rather have only 3 days a week at 4 hrs each beats doing every night.

    Oh well, i've rambled off long enough, and as soon as I leave here, i'm checking the FB site.

    So thanks again Marcy for all your help and concerns.

    Nanci

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