About a transplant: So the last time I was as... - Kidney Disease

Kidney Disease

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About a transplant

BBland profile image

So the last time I was as at my Dr, I asked what the steps were when the time came , how do you get on the list for a donor kidney . He replied " you don't " . I'm just curious . Does anyone have any information on this issue ? I'm only at stage 3 , and so far am stable. Just asking in case the time comes sooner than later. I could have misunderstood him. Just wondering what everyone here thinks .

Thanks !

22 Replies

I'm attaching a link from UNOS that is eight pages long and will explain many of the things you are concerned about. I hope it answers your questions. If not come back with specifics and I'll see what else I have.


BBland profile image
BBland in reply to Mr_Kidney


Mhusband27 profile image
Mhusband27 in reply to BBland

First and foremost, your doctor (nephrologist) has to submit your info to a transplant center, so you need a doc that agrees it is time to get on the List.

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply to Mhusband27

Many transplant centers accept "self-referral" meaning you don't need your nephrologist to refer you. That being said your eGfr must be at or below 20% function. Blessings

Frankie24 profile image
Frankie24 in reply to Mr_Kidney

Very good reference for people with questions. Thank you for posting it, I am sure it will prove helpful to many who have questions about this process.

lowraind profile image
lowraind in reply to Mr_Kidney

The article has much good information. Just one thing--they said that you have two choices, dialysis or transplant. Actually, there are three, the third being palliative care. In skimming the article, they did mention that some centers cut people off from transplants at 80. Not sure how many 80+ year olds want to go through dialysis.

Mr_Kidney profile image
Mr_Kidney in reply to lowraind

Palliative care is always an option. I don't believe a persons age should automatically keep them off a transplant list. They may have to compete with people of all ages but there should be no arbitrary age that precludes someone from a transplant or dialysis.

BBland profile image
BBland in reply to Mr_Kidney

Thank you!

So far everyone is saying that I'm doing great and my next appointment is 6 months out . Just had some blood work about a week ago and my numbers are stable. I know transplant information is something I need to be knowledgeable about because , let's face it , we can't always trust our Doctor's. Sad to say . Just being a member of this group, I've learned more through you all and my own research ,than I've gotten from medical professionals thus far. It just seems like they're not concerned right now. So for now , I'll just continue to ask and research on my own. I can't tell you all how grateful I am to have found this online community !

God Bless !

Although my nephrologist referred me, due to ESRD, I had the same question in my mind when I reached stage 4. I did some research and found that you can in fact refer yourself by contacting a hospital. I did not realize I could have done it much sooner than the time that the nephrologist chose. There is much involved in the process, I had a page long to do list I thought I would never complete, of system checks that needed to be done before clearance. I don't think it is unreasonable to think about it. You are the one who must look out for your health after all ! Good luck, take care.

Mr_Kidney profile image
Mr_Kidney in reply to Frankie24

You are correct. Being proactive is a great habit to get into with CKD. It becomes so much more important when you reach ESRD. It also makes doing what you need to do in order to get evaluated and listed less scary because the prior knowledge you have acquired is empowering and the task is less daunting.

Haven't heard from you in a while F24, glad to see that you are with us again. Hope you are feeling stronger and better. Thanks for sharing your insights.

BBland profile image
BBland in reply to Frankie24

Absolutely! Ty ! Blessings .

Kbressler profile image
KbresslerNKF Peer Mentor

I do not know what your diagnosis is I.e. FSGS, IgA, PKD but if you have a Nephrotic Syndrome Disease you will most likely need a transplant. My recommendation is to prepare for a transplant NOT dialysis. Now is the time to look for a donor. Your best bet is family brothers sisters cousins. Afte4 not you can work on other sources. Don’t keep your illness secret as that minimizes your ability to find a donor. I don’t know what your doctor told you but you can go on a waiting list but that is not indicated at this point in your illness. Kidneysolutions.org is a free no fee site that I am involved in we can assist you in seeking a donor and help you through the process. Remember if you don’t learn all you can about your illness and tell others about it they can’t pray for you or help you on your journey. Having kidney disease is not a sin it is something to be reckoned with and now is the time to get started.

BBland profile image
BBland in reply to Kbressler

At my last appointment I was stage 3a. That was in April. I have not received an official diagnosis as to what kind of kidney failure I have , they have just called it " Kidney failure " . Everything I've learned so far is from reading up on stuff and hearing from gracious people like yourself. I'm so grateful to God I found this group , otherwise I'd be up the creek without a paddle . I know I'll need a transplant. Right now my doctor's are just really emphasizing " eat well stay well " and I'm trying as hard as I can. I will check out the link you shared. Thank you so much for your information. God bless .

Kbressler profile image
KbresslerNKF Peer Mentor in reply to BBland

You are more then welcome.

I had to do it all myself. I had to find out what transplant centers were covered through my insurance plan (i had 5 or 6 hospitals to choose from in my state) and then i had to call them myself and ask to schedule an appointment for evaluation. I was already stage 5 at the time and had no trouble getting an appointment for the evaluation. It was weird just cold calling someplace and being like "hey, i need a kidney transplant and am hoping you can help me." but the transplant center was really helpful and put me right at ease. They had answers to all my questions, asked me all the questions that they needed to in order to set everything up and then i went in for my appointment and so began the journey. I am currently 16 days post transplant. :)

BBland profile image
BBland in reply to aben

Praise God !

I am so grateful to hear success stories from people as yourself. I'm so confused . I have so many questions and not sure where to turn. Thank you for sharing your journey. Best wishes ! ☺️

WYOAnne profile image
WYOAnneNKF Ambassador in reply to aben

Congratulations on your transplant!!! Hope you continue to do well. It is a challenge at first with the meds and frequent labs. But it sure is all worth it! I am 18 years post transplant and living well!

aben profile image
aben in reply to WYOAnne

18 years... that's fantastic, congratulations! I love hearing from people who have had transplants last so long. That part of it all is such an unknown that i really don't know what to expect exactly and it excites me and fills me with hope to hear of people getting that much time and still doing great! 💖

WYOAnne profile image
WYOAnneNKF Ambassador in reply to aben

Please let me know if you have any questions on this kidney journey that we are all on. LIFE is worth it all....not too sound too "corny." I feel great. We travel and hardly think of any problems. Have been to Europe 3x and all over the Caribbean. Love it!! Just think of the positive and always speak out for yourself. I learned this the hard way. If you don't understand something, always ask questions. THIS is your LIFE and your HEALTH!!!!

Thinking of you!!!!

BBland profile image
BBland in reply to aben

How are you doing ? Just wanted to check in and say Hi ! Praying you are well. ❤️

aben profile image
aben in reply to BBland

I'm doing fantastic, thank you for checking! ❤ I have healed and progressed ahead of schedule the whole way so far. There's a lot of side effects with the immunosuppressant medications but they're getting less as time goes on and medication levels stabilize. Overall, I'm feeling really good though. I go back to work in a couple of weeks so almost back to normal life again. I'm a little nervous about going back just as far as finding the balance between work and taking care of myself (making sure to drink enough water through the day, take enough bathroom breaks, not let my stress levels get too high, etc) while working full time at a demanding job but I know I'll figure it out and it will all be fine. Thank you again for checking to see how I was doing, that really is so kind of you. How is everything going with you? 😊

WYOAnne profile image
WYOAnneNKF Ambassador

My nephrologist referred me to the transplant center and I was put on the UNOS list. I think it depends on the center, but most do require a referral. If I had a living donor, some centers perform the surgery before you even go on dialysis. It's not too early for you to be looking for a donor - family, friends, work mates, church? It takes time because if someone comes forward they need to have testing done to make sure they are a match & that it would not endanger their health.

As far as age, I don't think there is a magic cut off age, rather it depends on if there are other health issues. When I had my transplant, I met a 76 year old lady who had also just had a kidney transplant.

I was in the process of having a friend tested to be my living donor, when I got the call that the transplant center had a kidney for me. I am now 18+ years post transplant and living well. My best advice......be your own advocate!

Good luck to you and let us know if you specific questions for us.

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