Hello everyone: I've been on this site for a few years now. I came on here today to ask about other's experience with their kidney transplant and any tips they may have for the evaluations. Any and all advice is appreciated, negative and positive. If you could give one one piece of advice to another person about transplants and the evaluations, what would it be? Why?
I know a transplant is not the cure all it could be. Two years ago, my eGFR declined to 20 and my Nephrologist is all happy that I was eligible for dialysis or transplant, but I wasn't interested in doing it while I was feeling fine. Why push fate and take a chance on something worse while my kidney is still working. Fast forward to now two years later. My eGFR is now 10.9 and stable for over a year. My Nephrologist is again pushing me to do dialysis and/or transplant. My one kidney is still working and I still fine. I am not rushing into dialysis, as he wants me to do, but I am set to get evaluated to get on various transplant waiting lists at different centers next month, just in case. I'd like to know how your kidney transplant surgeries went and how your evaluations went and if you have any tips, recommendations you may have for the evaluations. I am still doing everything I can to avoid dialysis/transplant. I exercise everyday. I meditate. I take my meds. I eat a Vegan Whole Foods Plant Based Diet supplemented with Ketologues. I eat lots of fruits and vegetables. I pray a great deal not just for me but for everyone. And yes, I'm still praying for a miracle.
I'm one of those persons that know that physicians are not Gods and that they don't know everything. And putting a patient on dialysis and/or transplant is when they make the big bucks not from office visits so they push us into it. I also know about the lifelong meds that a transplant patient has to take to keep the transplant safe and that there are lots of them and it isn't cheap and many make you feel worse than you were before the transplant. People don't want to hear negative experiences, especially our specialists who are trying to talk us into doing something we really don't want to do. But I do. I feel I'm as informed as I can be and still I wonder what else is there that I'm missing. Thanks in advance for sharing your experience. I wish everyone my sincere best wishes. Stay safe. Regards,
Written by
FelineFandom146
To view profiles and participate in discussions please or .
Get evaluated as many places as you can. If you can get there within a couple of hours, do it. You can be evaluated at as many places as you want. You can only LIST with one within the region. The process takes time, depending on where you go. Look up the statistics of how often they do transplant also. And lastly, fight...if you need to. I should say advocate. I was declined the first evaluation I did for "being overweight" until I got a letter stating that the BMI level was above where I had been for years. I made them back date my wait time and got back two years.
I did dialysis, sooner than I should. I was down to GFR of 7 but felt fine. No symptoms. I had a fistula done in at the end of June and was on in October. Too soon and had nothing but issues for 6 months with the fistula. So, get one now, in case. You do not want a chest catheter. Unless you are thinking PD.
BTW, I lasted 6 years with a GFR of 15 to11 doing what you are doing with diet. Keep it up and see how long you can go. Make sure you are helping the kidney with water intake. I won't mince words anymore, dialysis sucks. And transplant is not the end all of cures....because it is not a cure, it is a treatment. But the freedom from dialysis is worth it. No one deserves CKD, but at least we have a future to go to. Some illnesses don't.
Thank you for your comment, Bassetmommer and your tips. Much appreciated. My insurance fortunately has no limits as to where I can go so I'm going wherever I'm able to. What you mean I an list with one within the region. My Nephrologist didn't mention that neither have any of the Transplant centers I was referred to. I'm a strong advocate for myself and others. Frankly, I don't trust physicians. I know how they only know 1% of what is going on. I'm keeping to my diet to see how long I can go. I remember the story my Nephrologist tol dme last year when my eGFR dropped to 20, thanks to a bad cocktail of meds my GP put me on for a painful UTI, but that is another story. Anyway, one of his patients had a eGFR of 2 and wasn't ill or showing any clinical signs. She was doing great and could have been for awhile. Our docs don't know everything. Anyway, my doctor was scared for her and pushed her onto dialysis and now she is ill and so on. Trust your body, trust your gut. No one knows it better than you do. If you're not ready, you're not ready. Besides, as you and I concur, transplant is not the end of cures and it isn't a cure. It is a treatment. It is better than the alternatives. Thanks again. Stay safe.
Evaluations can be quite overwhelming, and it is important to allocate most of your day to the center for these appointments. You will receive an abundance of information during these sessions, so be sure to bring a means of taking notes. Being listed at multiple transplant centers can be beneficial, but it is important to consider your insurance coverage, as some plans only allow you to be listed at a single facility. Other insurance policies may require you to be listed in your home state before you can be considered at out-of-state facilities. Other insurances have no restrictions.
You can always choose to be listed and placed on hold, allowing you to accrue time on the transplant list, and when you're ready, the center can activate your status. It’s important to recognize that a kidney transplant is not the only option, and while it offers significant benefits, it also requires substantial effort. Dialysis, too, is a demanding process. Ultimately, the goal of a transplant is to help you return to a more normal lifestyle, but it’s not the right choice for everyone. It’s crucial to determine the path that works best for you.
Below are two websites where you can compare different kidney transplant centers. Both offer valuable information at no cost, and a paid plan is not necessary to access the resources:
Thank you for your comment, MSW1992. Much appreciated. My insurance fortunately has no limits as to where I can go so I'm going wherever I'm able to. I didn't know about being listed and placed on hold, so thanks for that information. I'm a strong advocate for myself and others. I know a transplant isn't the cure all and I'm not into getting dialysis so I have to hope for a pre-emptive transplant if that is in God's plan. Thanks for the two sites you provided. I shall be delving into them right away. I'm quite sure the evaluation process is a big deal not to be taken lightly. I believe in the doing the best I can and leaving the rest in God's hands because in the end that is all I can really do anyway. Thanks again. Stay safe.
You may want to double-check your insurance plan. Insurance plans can pay for you to list and be active at multiple centers. However, the centers will share their billing info with your insurance company(ies). Some centers won't/can't share info or insist on performing their very own tests, so you'll want to remember that your insurance company(ies) likely will not pay for duplication so you'll probably wind up picking up the costs yourself. That can get very expensive quickly. My husband was on two transplant lists and that was about all he could handle - the one center further away wanted to run blood tests more frequently, do more cardiac testing which found another problem requiring yet an additional procedure (and getting inactivated at both centers in that process), and more. My haggard husband also started to worry that taking multiple vials of blood all the the time wouldn't harm his health. It was really nice that our two centers could share some things because their communications and lab systems were similar, but they ran my husband (and I) ragged with the driving, scheduling extras that they wanted us to do, the constant verifying that tests were received, and more. So it's good to be very strategic with your planning.
Hello Darlenia! Thanks for that info. First thing I did after having my Nephrologist send referrals was check in with insurance company. In fact, I doublechecked. The procedure is going to be expensive enough since insurance doesn't cover 100%. but what can one do, right? Thanks again. Greatly appreciated. I'm expecting to do the same tests over again. Nephro doc did mention that. Stay safe. Regards to you and your husband.
Hello again! Thanks for the websites. Question: Have you used Transplant Coach? Exactly what is it? What is your experience with it? I noticed they have pricing available....Thanks again for your comment.
Several of my patients have shared that using Transplant Coach to compare transplant center wait times in relation to their blood type has been particularly helpful in their decision-making process. One patient utilized a paid service for this comparison, while another accessed a free interactive map. Upon identifying a transplant center of interest, both patients were able to explore further details using the Scientific Registry of Transplant Recipients (SRTR) to review comprehensive performance data and center statistics.
These resources provide valuable insights into wait times, survival rates, and other critical metrics that can guide patients in selecting the most appropriate transplant center for their needs.
Hi. Thanks for the links. I looked at the maps in the kidney coach site but it looks like it hasn’t been updated recently so a person may want to double check with their region’s transplant center for the current average wait time for various blood types. My transplant center in Oregon told me the average wait time for O blood type is nearly five years. This site has different info. However, the site you reference has a lot of good information.
I just checked, the map reports it was last updated Feb 24, 2025. I have spoken to people from other states and its sad how long some of these wait times are.
Since your post conveys a sense of preexisting distrust of healthcare professionals, I urge you to work cooperatively with the center that you will ultimately use for your ESRD management, no matter what treatment you end up choosing. Just like with any relationships, a successful outcome depends on effective bidirectional communication and mutual trust and respect. If you already have bias against people who will help you make the treatment decision, then it is going to be difficult for them provide you with the best care you deserve.
Hello LisaSnow! Your comment is appreciated. As I said, I know the system well. Always start out nice, pliable and dumb, and then wrench it up when you have to fight. I always give a new physician a fair shake and go from there. How they treat me is how I treat them or I just move onward from there. As you said, a successful relationship depends on mutual communication, trust and respect, but it seems a great many physicians forget that, especially the more specialized they are. Such as exists with Lawyers. Because if I blindly go in thinking they know everything I'm in just as much danger as you said. Thank you. Stay safe.
Thank you ShyLoverDoctor for your comment! Much appreciated. I'm glad things worked out for you at the Mayo Clinic. I, however was not impressed with the Mayo Clinic and could not recommend them. Stay safe.
Something I wasn’t aware of when being evaluated and didn’t know to ask is whether the center is steroid sparing. The hospital I was transplanted at is and I am so grateful to not be on a daily dose of prednisone. The other hospital I was evaluated and listed at told me I would require steroids for life. It is variable by your circumstances and explained to me that things like how good of a match the transplanted kidney is, antibodies, etc affect the decision but if possible I would recommend asking the question so you have the information if steroid use is a concern for you. I was on prednisone prior to transplant and hated the side effects and increased diabetes risk associated with steroids.
Thank you mamtutu for that important point I didn't even think of. Stay safe! Of course, it all depends on how good of a match the kidney is, too, right?
Definitely a great point. I've had my transplant for 11 years, but due to having BK virus in my kidney only a year after transplant it's been limping along for almost all of that time.
However, yes, I've been prednisone for all that time. A low does for a very long time to let my immune system fight with the BK. The steroids have screwed my shoulders up though. I had to have a rotator cuff repair on my left and the surgeon told me that my muscle or "meat" that connects everything is weak and more like a "crab meat" consistency than a strong "steak". This is in part due to long term steroid use.
Hello, you are very proactive to ask these questions before jumping into dialysis and/or kidney transplant. I've been using this site since May2019 and have written that my spouse' kidney transplant in Nov 2018 and his experience to now has not been a good one. He felt better before the transplant compared to the past 6 plus years. The questions y ou should ask is about side effects taking the different immunosuppressant medications. This is the only reason my spouse would not get on the wait list for this gifted organ if we knew that 'some people', never did find out a percentage even from research I've done reading medical articles, have negative side effects the entire time taking the medications. My spouse quality of life is not good since getting the transplant only due to the meds. There is nothing more his 3 nephrologists that he sees in two different medical hospitals can do to help. Also with more virus', your immunity is very compromised and though it is your choice how you live with risk, we still live like the covid19 pandemic just arrived. There is alot of judgement about this from people, but we both got covid19 for the first time due to a 5 day hospital stay where doctors,nurses and more would not put on a mask though we asked strongly and repeatedly. No one cares it seems anymore for people who are immunocompromised. So do your homework now. I wish you all the best. Some people have a superb outcome being on these types of strong medications. My husband has not had that outcome. This journey has been much more difficult than when he had Hodgkins lymphoma cancer and chemo treatments for it many years ago and is in remission. There was light at the end of the tunnel. This journey with transplant, no light. Take care.
I feel bad for your husband. I can relate. I am only two months post transplant, but nothing is going well. I feel way worse than before my preemptive living donor transplant. My GFR was 11, but all my labs were normal, I felt good and could do everything I needed and wanted to do. My new kidney isn't working well. When I had the transplant, I was in the hospital for 9 days. I went into the hospital with ESRD and came out with ESRD. When I was released, my GFR was 13. Currently, my GFR is 19. One month later, I was back in the hospital for 5 days because of failure to thrive. I couldn't even stand or walk because I was so weak. I had to have two blood transfusions. Now today, one month after that, I can't stand for more than a few minutes, can't walk very far without getting exhausted, and can't do any of the things I need or want to do. I'm only comfortable sitting or lying down. The side effects from the immunosuppressants are terrible. They have switched me to different ones, which aren't any better. I hope things eventually turn around. I wish you and your husband the best. I can relate to him and I know it affects you as well.
Hello Gardner, NY! So sorry to hear that your husband's experience was not a good one. Yes, the meds one must take after the transplant can make one so sick, not to mention turning off our immune system to keep the transplant safe. What a choice one must make to live, huh? One reason I don't jump into anything just because a physician says to do so. Because I already get sick so easy when someone nearby coughs or sneezes we still wear masks when out in public and in clinic settings and so far safe from flu, RSV and COVID. People can be so selfish. As if it is really difficult to wear a mask. I'm especially troubled when going into one of my physician's offices and seeing no masks on staff, even in the Nephrologist's office. These people should all know better. Next time, make a big deal about it. Shout at them to put on a mask or get away from you. Remind them of what is going on. Playing devil's advocate here, sometimes they get so busy they do forget. Remind them. Be the patient from hell to keep you and yours safe. The COVID is not gone. The flu and RSV are still around and who knows what else. Show compassion and kindness. People are still getting ill and die. Be considerate of one another. What if it was your family member or yourself that was immunocompromised? I wish you and your husband the best and may God watch over you all. Stay safe. Regards,
My nephrologist told me that you are interviewing the transplant center as much as they are interviewing you. You will spend a lot of time with them as you go towards transplant. It will also help build some confidence in the center.
The other thing about not waiting and going for the pre-emptive transplant is that you are healthier and recover better. Good luck.
Unfortunately that is not always the case. I had a preemptive living donor transplant two months ago and the transplant team told me it was the ideal situation. Not for me. I felt way better before this transplant when my GFR was 11. My labs were all good. I could do everything I wanted to do and didn't feel sick. After the transplant I haven't felt good once. I was in the hospital for 9 days. This new kidney isn't working well. My GFR is 19. My labs aren't near as good as before the transplant. Between the crappy side effects from the immunosuppressant meds and being so weak I can't even stand for more than a few minutes and can't walk very long, I can't do any of the things I need or want to do. A month after the transplant I had to be readmitted to the hospital for 5 days because I couldn't stand or walk at all. I had to have two blood transfusions because my hemoglobin dropped to 5.8 and RBC to 1.9. Now one month later my hemoglobin is free falling again and they don't know why. My iron and EPO are normal. For the past two weeks I've had bad stomach pain and again they don't know why. I had a CT Scan yesterday, but don't know the results yet. If I could do it over, I would definitely wait longer before jumping into a transplant. This was totally unexpected. I was only on the transplant list for 7 months. My first reaction when they called and said they had a kidney for me was NO, I don't want it. They convinced me to come in and talk with them about it. I had a month to decide. Up until the last minute I really wasn't comfortable doing it. I let the transplant team, family and friends convince me it was too good an opportunity to pass up. I'm praying things turn around and I won't end up on dialysis.
So true, DexterLab. Thanks for your comment. With all the questions, research etc. floating around my head, I completely forgot about that fact. and that is something I always normally remember when seeing a new physician. Thank you. Stay safe.
Hi. I too have been working hard at staying off dialysis by balancing my diet and exercise. So far it’s been four years and my kidney function has remained around EGFR of 16. My nephrologist thought four years ago I’d be on dialysis quickly. She had me be evaluated for transplant so I have been on the transplant list for four years accumulating time on the wait list. This journey has many ups and downs and being listed on the transplant list does not guarantee a immediate transplant and at times you might be placed on hold on that list if other medical issues arise so I suggest the sooner you get evaluated and on the list the better. Good luck on your journey.
Thanks for your comment CKD2-4, I'm at CKD 5. You're right: A good diet, especially a Very low protein Plant based diet free of animal protein along with Ketologues has been proven to slow down progression of CKD. Some people on this diet, not all have been able to raise their eGFR so much they are no longer in need of dialysis/transplant. I'd like to do that but I'm not naive either. I know the realities, but if I can just keep it nice and slow for several years, I'll be happy. I just began a three month trial of ketologues along with my diet and exercise to see if it helps me or not. At a eGFR of 10.9 now I really have nothing to lose. Anything and everything else is better than the alternative. It's really a shame in this country that physicians don't advise their patients about diet and exercise being a third alternative treatment for kidney disease aside from dialysis and/or transplant. It really can make a difference. Mackenzie Walser M.D. a Nephroglogist was the first to discover the benefit of very low protein diets and Ketologues. Until 2017, we could not obtain ketologues in this country. A good book to read is Coping with Kidney Disease by Mackenzie Walser MD. Another book which builds on this premise is Stopping Kidney Disease by Lee Hull. The author is a CKD patient who did extensive research on CKD, diets and ketologues and even bought ketologues to USA. There are no miracle cures out there, but some ways work for some. Thanks again. Stay safe. Regards,
I was just reading about getting on the list preemptively. I believe it's a way to list without being on dialysis. Why not list that way, and decide years down the road, that way if you choose to follow through, your not wasting years worrying about if you should or shouldn't. I had an acute kidney injury that never recovered after a liver failure and transplant, so was on an a special program called safety net, and got a kidney within 4 months of the liver transplant. It's a long..,short story, as I got sick in June, had liver transplant in August, and kidney transplant in Dec. 2024. I was on dialysis from June to Dec. I was way too sick to argue with anyone, Drs, family, etc. Hospice was a consideration. I decided to trust the docs and surgeons, I'm alive and flourishing. Yes I have side effects from meds but I can eat, walk, talk, connect with friends and family. I'm so glad I did. Every story and circumstance is different, and if it were just my kidneys having a low gfr, and I felt good I am sure I would feel the same as you. Good luck, and please check out info on getting on the preemptive list.
As much as you try to wait for the right moment, any life or health experience can change your course. But it is your decision and it should always be. And yes, doctors can make decisions that do not fit your situation. They are human and may have attended medical programs that promoted certain programs of care. And yes, you will be fortunate to find one who is a good listener and open to different opinions. But in the final analysis you nor I am doctors, so remember feeling fine does not mean you are doing fine. Your health can turn on a dime, and a medical intervention may have to come quickly. Particularly if you have to start with dialysis. Having a catheter put in your neck is not great and dangerous. Been there. Having it removed is also painful. Finally, dialysis or transplant is nothing anyone ever wants, but thank God we have options. Some diseases have none. And yes, I have experienced both and have horror stories. But at least I am alive presently to tell those stories. The best to you, and from what I can tell from your post, you are up to the task of making the right decision for you.
Thanks Eyak1971 for your comment. Much appreciated. As long as I'm feeling fine and my labs agree, that is what I'm talking about, especially when your Nephrologist tries to push you onto dialysis and after reviewing labs and further discussion agrees that clinically he can't force me to because my labs don't agree. Physicians make mistakes, sometimes a great many and we must remember that no one knows our body, situation, etc. better than we do. Some physicians are caring, responsible individuals who only want the best for us, but in the scheme of things they know only 1% of what is going on. A good physician will admit that. Sadly, some physicians are motivated by money. Fact is fact. I am a Doctor three times over but not a physician. I know that there is no way a physician can know it all, nor remember it all, anymore than I can know it all or remember all I've studied in Post Graduate school. All I can do is the best I can and leave the rest in God's hands. When my number or time is up, it just doesn't matter what I want, my physician wants or what anyone does, I'm gone. Stay safe. Thanks again.
Thanks for sharing your story. That is what the forum is about. We all want is best for anyone but realize life's decisions are our own. We try to get reliable information from reliable sources and then use our own ability to problem solve to come with an answer. One of the new tools we have is ai. It makes it easier to research information but even it's resolutions can be questioned. The best to you and please share your ongoing story from time to time.
We all can learn from others. If you do get a chance to read it, you may get a new perspective of the process in saying no. And how there are moments when you do say yes or no that can be more beneficial. Particularly if you have others in your life you truly care about. What I have learned in life is that reading and experiencing others makes your life so much rewarding. I have interacted with the poor and the rich. I have worked in a prison and served in the military. I have been completely alone and part of a typical family. Like many on this forum, I have had years of good health and bad. I have learned that each bad moment seems to last forever, but it does pass on to another better moment And I havd learn lessons from each experience. God does not give us more than we can handle. And if we just reach out, there are others to help pick up the pieces. And finally, we are stronger than we think we are, but sharing tears of joy or sorrows ok.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Question for those who have pkd and had a transplant 
steroids - kidney transplant
Medicare and Transplant
