Looking for what to expect as I consider Kidney Transplant

@mlmcg - Thank you for sharing. You answered all my questions. You have had a long road and hopefully it is all behind you. The best of health to you.

@mlmcg, I would like to welcome you to Mayo Connect. I am pleased to meet you (sorry for the delay-I was traveling). You have certainly had a complicated journey. And your self dedication to taking command of your physical need is impressive. I was on dialysis for about 9 weeks immediately before my transplant after suffering acute kidney failure, and I never did know the intricacies of the process. So - thank you for that input. I can tell that you were able to help Lynn, and I feel sure that others, too, will read and benefit from your experience.

Congratulations on your transplant in 2008:-). I received a liver/kidney transplant in 2009. I am doing well; I will never forget my experience. And I am forever thankful for my donor (deceased).

How are you doing? And how do you manage to adhere to your good diet after almost 10 years?

Rosemary

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

@mlmcg - Thank you for sharing your dialysis stories. That is just one more motivator for me to get healthy and stay healthy. It just reinforces that my new eating habits that have me losing weight now must become my lifestyle and not a diet. I do not want to squander my transplant when it comes my way and I certainly do not want to go through multiple transplants if I can do anything to avoid it.

I like your motto, "The kidney comes first." or whatever organ you had transplanted.

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.

mlmcg

@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.

@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.
http://www.mayoclinic.org/departments-centers/kidney-transplant/home/orc-20203197
@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.
Rosemary

@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!
- Kristin

@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!!!