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,
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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.
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.
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.
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.
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.
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.
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.
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.
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