1. < Transplants

Looking for what to expect as I consider Kidney Transplant

Posted by Sevkira @sevkira, Jul 11, 2017

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 whether dialysis is better or a transplant. I know any surgey has risks.

Interested in more discussions like this? Go to the Transplants Support Group.

Kristin Eggebraaten | @keggebraaten | Sep 29, 2017
In reply to @IWantToBelieve "@rosemarya - Hi Rosemary. I didn't know the best place to ask this so correct me..." + (show)
@IWantToBelieve

@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 (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 transplant-rst@mayo.edu. 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!
-Kristin

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 10, 2017

@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?
Rosemary

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2 replies
mlmcg | @mlmcg | Oct 10, 2017
In reply to @rosemarya "@sevkira, I hope that you are progressing forward with your medical treatment. I had a few..." + (show)
@rosemarya

@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?
Rosemary

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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

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 10, 2017
In reply to @mlmcg "I could have used this kind of help when I had my transplant, if I am..." + (show)
@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

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@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/
or
Celebrate your Transplant https://connect.mayoclinic.org/discussion/celebrate-your-transplant-blessings/
These are just suggestions,. I would enjoy hearing more from you.
Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 10, 2017
In reply to @rosemarya "@sevkira, I hope that you are progressing forward with your medical treatment. I had a few..." + (show)
@rosemarya

@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?
Rosemary

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@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!

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mlmcg | @mlmcg | Oct 10, 2017
In reply to @mlmcg "I could have used this kind of help when I had my transplant, if I am..." + (show)
@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

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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. 
mlmcg

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 11, 2017
In reply to @mlmcg "I could have used this kind of help when I had my transplant, if I am..." + (show)
@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

Jump to this post

@mlmcg, You have quite an amazing story. And you are being generous to share it. It shows how different we all are, and how many different methods and treatment can be provided for each one of us. You must have had a good doctor to take care of you.

That is really interesting that you got the call right after you received a 90 day refill of your meds. That had to have been a complete surprise! The "call" is really a special moment, isn't it?

Rosemary

Here is information about Cytomegalovirus (CMV) if anyone needs it.
http://www.mayoclinic.org/diseases-conditions/cmv/symptoms-causes/syc-20355358

REPLY
mlmcg | @mlmcg | Oct 11, 2017
In reply to @mlmcg "I could have used this kind of help when I had my transplant, if I am..." + (show)
@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

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I had been on the transplant list for 6 years when I received "the call" that a kidney, a good match, was calling my name. When I received that call, on my cell phone, I was on the house phone talking with the person who had the list of those who were willing to be available from midnight to midnight to drive me to the hospital. I put my cell phone on speaker so both of us could hear what I had to do. 
I have had the same doctor for almost 20 years and any patient who is willing to take care of them self he will be there for them 24-7. When I am in the hospital he will stop in to see how I was doing, even when he is not my admitting doctor.
When I needed to "talk" with others going through or have been through the "joys" of a transplant, there were none. I do not want anyone to go through it alone. Doctors and nurses who have not had a transplant can only tell you what others have told them or what they have read. I am willing to share what I have experienced. 
mlmcg

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 12, 2017
In reply to @mlmcg "I could have used this kind of help when I had my transplant, if I am..." + (show)
@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

Jump to this post

@mlmcg - I am anxiously waiting for someone else to join this conversation. Your story is remarkable.
I was really interested in your details about your Call. That explains another instance of how individualized the entire transplant process is!
By the time I got my Call, I was at Mayo Clinic Rochester and had been told to "Not leave town" Did you have to travel far to get to your facility?

Rosemary

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mlmcg | @mlmcg | Oct 12, 2017
In reply to @mlmcg "I could have used this kind of help when I had my transplant, if I am..." + (show)
@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

Jump to this post

It takes about an hour and a half during the day to get to the hospital where I had my transplant, in the dead of night, when we went, about 45 minutes. 
I live in the San Francisco Bay Area. My transplant was done at UCSF, University of California, San Francisco, I live in San Jose. We drove at highway speed passing a few cars. My transplant came from the University of Stanford in Palo Alto, which we passed on the way. 
When I was waiting to be checked in a driver arrived with an ice chest. I did not ask if he had a kidney from Stanford, but as soon as I was in the room a nurse with a needle and 10 empty vials arrived. I have never given so much blood at one time. I am not an easy stick, but he was good.
Which hospital did you have your transplant in? When they built that big tall building across from Methodist Hospital my aunt and uncle, who moved to Rochester in the late 30's, moved into that retirement home.
mlmcg

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