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Hi, I was wondering if anyone can give me more info on what to ask the transplant team when I go for my evaluation. I’m struggling with weather dialysis is better or a transplant. I know any surgey has risks.
We are not all raised to eat healthy foods, and what we eat is a lifestyle, forever. When healthy foods are not available we will put anything in our mouth to shut our tummies up when all it wanted was water. Not flavored water, or sodas/pop, just plain old water. When you start a meal with water you could have a happier body and we all want a “happy body”. I believe that I was given the kidney when I was, was because I took good care of my body. Someone else could have been passed over with the same blood type and younger but did not take care of their body.
With a positive attitude that you will take care of your body and be a good caregiver to that kidney, when it arrives, you will make it. Oh. keep a box of BOOST PLUS with you just in case, when you are really hungry and want that “bad” food to shut your tummy up it’s always a good go-to.
@rosemarya – Hi Rosemary. I didn’t know the best place to ask this so correct me if I’m wrong. I’m trying to determine if there is a BMI or weight limit for getting a kidney transplant at the Mayo Clinic. The complication is that my diseased kidneys could weigh up to 30 lbs so I can’t just aim for a healthy BMI. I’m not in touch with the transplant team yet because I have to wait until my GFR is 20 and it is 22 now.
Thanks for finding an answer or pointing me in the right direction. Googling has not turned up a reliable answer nor has an extensive search on the Mayo website.
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@lcamino Hi Lynn, This is a good question. I feel certain that this is a pressing concern for many of our readers!
I looked at (and I’m sure you did, too) the Mayo Kidney Transplant Home Page. I am providing it below as a reference for easy reference for you, or any of our readers. Here you will find links to kidney transplant information. While I did not find anything as specific as your question, I did see a note to encouraging patients to make contact with the Mayo staff to answer questions about transplant. There is a “Contact Us” Icon, where you can find the contact information.
@keggebraaten, do you have anything that you can add?
Lynn, You are being so very proactive as you approach the need for transplant, I know that you are being treated at your home by your local nephrologist, but – Have you considered a consult with the Kidney Transplant Dept at Mayo where you anticipate having your transplant? They do work with our local physicians who are at a distance to better monitor our care.
@lcamino and @rosemarya – I was able to check with one of our pre-transplant nurses this morning. She verified that our BMI cutoff for pre-kidney transplant patients is 40. That said, if patients need a kidney transplant and are over the 40 BMI limit, I would still recommend that they contact the transplant center. Often there are weight loss suggestions our doctors and dieticians can make to assist the weight loss process. We know that weight loss is very difficult, and we know that PKD patients carry some of their weight in their enlarged kidneys….the BMI of 40 is a guideline so if you are over that BMI, you shouldn’t give up hope. Transplant could still be an option for that group of patients. I hope this information helps. I am here to help if you need anything more. Have a great weekend!
@rosemarya – Well I have been told by my Mayo nephrologist that I don’t meet with the transplant team until my GFR is 20 and it is at 22 so no I have not met with the Mayo transplant team. Late last night when I looked on the website I missed the place to “Contact Us” so I will give that a try. All I could find was where to make an appointment.
Thanks for your help!
@keggebraaten and @rosemarya THANK YOU SO MUCH! I never even got a chance to use Rosemary’s link to contact Mayo for help! You guys are fantastic and I’m so thankful for you! This is not the first time one of you has asked a doctor or nurse a question to help us out and it is so helpful and makes us feel so valued.
While I’m going to keep up my weight loss with Jenny Craig I’m more relaxed as my BMI continues to drop. While I have a long way to go to meet my goal I’m relieved that I’m in the “safe zone”. Having said that I will keep walking the dogs and using light weights. For 5 weeks I have been losing 1-2 lbs per week with the help of Jenny Craig. I will be asking my nephrologist if he can estimate the weight of my enlarged kidneys so I know how much is reasonable to lose.
Thanks again and have a great weekend!!!
@lcamino (and everyone) – this forum is a great place to ask questions, because if you have the question, chances are someone else does too. But if you ever have questions you would like to ask privately, you can always email us at firstname.lastname@example.org. I get those emails and am usually able to provide fairly quick responses. Of note, we aren’t able to give medical advice specific to your condition. Anyone with those types of questions should contact the doctor who is treating them for information about their medical situation. We are very happy to help with any general or logistic questions though. Thanks for asking this great question. Best of luck on your healthy living plans!
@sevkira, I hope that you are progressing forward with your medical treatment. I had a few minutes, and I wanted to drop in and ask if there are any questions that you need answered? Or do you have any new concerns that might have come up since we last communicated?
In spit of everything my kidney has had to go through, since I was given the opportunity to care for it, it is very happy. Each time I go for my annual check-up, as well as blood work every 6 weeks, I receive a "continue what you are doing". Occasionally my meds have been increased and that is it. Thank you for checking in.mlmcg
I could have used this kind of help when I had my transplant, if I am able to help one person I can say “I did what I am suppose to do.” Having come from a ‘determined’ family helped. (My grandmother raised 5 children by herself and they all graduated from high school during the depression.) Not having to cook for anyone else makes following my diet easy. (When my father found out he was on the edge of Type 2 Diabetes my mother said she was only going to cook one dinner, the one for my father. Everyone was happy my mother lost weight, my little brother lost weight, and my father never had to take pills or injections to keep his diabetes under control.)
I cannot believe being on dialysis only 9 weeks, you missed all the fun of meeting new people. Most were diabetic, or refused to follow the doctors orders and lost both legs, or gained over 200 pound after their first transplant which killed that kidney then had to go back on dialysis, there was one who had 3 kidney transplants and killed them all. By the way, these were all men, I do not if that says anything.
As far as how am I doing, the kidney is happy consider what I have put in through. When I see a new doctor I always tell them “The kidney comes first.”
@mlmcg, I think that you are right – the kidney comes first! In my case it is liver/kidney. We must learn to ‘do what we are supposed to do’. And keep on doing it.
Yes, I was only on dialysis for 9 weeks. Mine was caused by acute kidney failure elated to my liver failure. I had just enough to know that I did not like dialysis, but it did keep me alive. It is kind of strange, though, because this was all so immediate and critical, that I never did learn anything about the ins and outs od dialysis. That is why I really appreciate when you generously shared your experiences.
I am happy that you are doing well since your transplant. Would you consider to share something, about your after transplant life on one of our other transplant forums?
I am a firm believer of supporting others thru their transplant process, so, I invite you to look at Living Life after Transplant https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/
Celebrate your Transplant https://connect.mayoclinic.org/discussion/celebrate-your-transplant-blessings/
These are just suggestions,. I would enjoy hearing more from you.
@mlmcg – This is a real coincidence! I just posted a message to you at the same time as you were posting! What is it they say about great minds?? Rosemary
I love the term ‘happy kidney” . My husband and I have dubbed that to be a medical term because we are familiar with it, too!
I forgot about washing hands each time you come home. I have been in the hospital so many times after my transplant that washing hands is something I do not do anymore. The one thing I do not do is share body fluids. I did have cytomegalovirus, I waited to have it well over a year after my transplant. So I had to take those expensive meds again. I would not recommend getting cytomegalovirus, I felt like I was having the flu but I knew it was not the flu. The virus eats your white blood cells until they are all gone and you cannot fight anything off. I still have the virus however it is dormant. I will share some things and some things I will not share.
When they knew I would be on hemodialysis they put a shunt in my left arm, it lasted a week. There was not enough time to start a fistula on the right arm so a catheter was put in within an hour or so before I had my first dialysis. A fistula was put in later and used for about two years until a nurse killed it. They had to go back to the catheter, which usually last 6-9 months. I had it in two and a half years. I was never a candidate for peritoneal, too many surgeries on my tummy.
I was able to have dialysis in the evening and found it a wonderful time to have dialysis. I never left tired, went home ate, so I could take my meds with food, went to bed, and got up refreshed the next morning. My doctor was able to get me on 4 days a week dialysis and I felt great. I could do what I wanted during the day went to dialysis in the evening, even went grocery shopping after dialysis when I was running out of food.
When I got the call that there was a kidney with my name on it, I had just received a 90 day supply of meds I needed while I was on dialysis. I still have them.
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