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.

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@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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@ca426 - That is so true. When people hear that I need a transplant they think dialysis is a reasonable solution and have no idea how hard it is on your body, time consuming, energy draining, diet restrictions etc. I'm also learning that many know nothing about live kidney donors and many think organ transplants return you to a life just like theirs. I do my best educating anyone who asks me but that is clearly not enough.

I can't believe your story - 4 kidney transplants!!! I find that both encouraging and discouraging. My best to your present kidney health.

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@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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Do you know why you had to have so many transplants? 
When I have experienced something more than once I now know that I was to learn from it and I did not. I do not have to be hit over the head any more with "that 2x4" before I have figured out what my body is trying to tell me.
I had to wake up and listen. Did I do something wrong? Did someone else do something wrong? Now what can I do not to experience it again? It took a few years before I realized that I was the one who had to learn how to take care of my body. The hard part was I had to listen, than be willing to accept and do what I learned. 
mlmcg

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@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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Don't let my story throw you off, mine is unique, I have a long history, I was born with a birth defect, had my first surgery when I was four....many years of surgeries..first kidney only lasted two months, we should learn from others in our same situation but not necessarily their specific issues, each of us have a different situations, my story is much to long for a paragraph to adequately describe what has happened but I am blessed beyond what I deserve.

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@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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@ca426, How long ago did you receive your new transplant? It sounds to me like you are doing well since you are looking to be involved in something new. That sounds exciting!
We look forward to hearing more of your story.
Rosemary

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@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 would like to send my deepest thanks and appreciation to all transplant caregivers.
We could not carry-on without you.
Rosemary

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@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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February 2015

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@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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Finding a kidney that not only is a match but the right size for a four year old is not easy. Our first surgery is always scary, I was 22 when I had my first one. How do you tell a four year old about surgery and all the meds they will have to take, in liquid form. Then there are the trips to see the doctor or doctors also having someone stick a needle in your arm every time you turn around. People tell me that they do not know how I have made it through everything I have been through. Compared with you I have had an easy road. Remember, if you can help one family with a young child through their process you are fortunate and did your job.
mlmcg

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@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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@fauneconner - Thank you so much for sharing Faune! I keep hearing wonderful things about the process at Mayo so I know that part is a solid decision for me. Do you know why someone would be deferred as a donor? I've not heard of that part before. Does it mean they could approved in the future?

I'm relieved to hear that you are relieved and things you were worried about where insignificant. It must be challenging having to make the trip (flying) for all of this. My donor and I will have to do the same as I live two plane flights from Mayo. How many days did your evaluation take? It is also very good to know that the test results are valid for 18 months. I did not know about the left kidney being preferred either. So amazing that an organ transplant is even possible!

I can't thank you enough for sharing as every tidbit I learn I can share with potential donors and my husband so we are better educators to those who ask, and we are not having to take in so much information at once when my time comes.

Please don't hesitate to share the results of your evaluation if you feel comfortable. I'm so glad it was an encouraging visit. Try to get lost in your life to get it off your mind as you wait (easier said than done I'm sure!).

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@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

@ca426, @mlmcg - What I have learned is that diseases manifest themselves differently in each person, thus no two cases are alike (similar but not exactly the same). Medicine and caring for our bodies is as much an art as a science and we all respond differently. It might not be a comfortable thought but there is are a lot of gray areas in medicine doctors need to make many judgement calls. I don't believe there is ever anyone is "our same situation" because everyone's body is different, responds differently to medicine, food, and treatment, has different stressors in life etc. The human body is so complex that I have come to respect it and be in awe with what doctors can do, even when sometimes we wish they could do more. I'm just so thankful there are doctors that are willing to make the hard decisions.

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@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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So well put!
mlmcg

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