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

@lcamino, and kidney patients,
Recently a member made a comment in a different transplant thread that I feel might be informative in this thread about kidney transplant. I think that whether someone has PKD; is waiting for a transplant; has received a kidney transplant; and family and loved ones might benefit with a place to ask questions and share their experiences with polycystic kidney disease (PKD).

I invite members to join in with any questions or experiences.
Rosemary

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@rosemarya – I’d love to read what you are referring to. Do you have a link?

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@rosemarya

@lcamino, and kidney patients,
Recently a member made a comment in a different transplant thread that I feel might be informative in this thread about kidney transplant. I think that whether someone has PKD; is waiting for a transplant; has received a kidney transplant; and family and loved ones might benefit with a place to ask questions and share their experiences with polycystic kidney disease (PKD).

I invite members to join in with any questions or experiences.
Rosemary

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I’d also like to tag @coastalgirl @mattgnyc , and invite them to join this discussion and share their experiences and insights about polycystic kidney disease (PKD).

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@lcamino, Lynn, I just saw this article about PKD treatment at Mayo. I hope you find it helpful.
https://newsnetwork.mayoclinic.org/discussion/infographic-polycystic-kidney-disease-pkd/
Rosemary

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@rosemarya – Thanks for sharing. I hope you learned a lot. I had never seen the article but was aware of the information which is why I came to Mayo for a second opinion. Thankfully that lead to being in a research study that is trying to get a medication approved by the FDA that slows the growth of cysts. At this time it is the only treatment for PKD which, if given early enough, would mean people would most likely not need dialysis or a transplant although the cysts would still grow on their kidneys, just at a much slower rate so end stage renal disease could be avoided. The medication is approved in Canada, Europe, and Japan – just not in the U.S.

I asked my doctor and the transplant determines if the diseased kidneys are to be removed. Apparently the cysts do shrink once the transplant is complete and no more cysts will grow so I think the decisions is based on the size of the person’s kidneys and the pain/complications they are causing pre-transplant.

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I was told in 1999 I had end stage renal failure, at that time you would be on dialysis in the next 6-9 months. I was able to start my HEMO dialysis in 2003 because the only way I knew I could help my kidneys stay well was by what I put in my mouth. Some foods are your kidneys friends and some foods destroy your kidneys. I live alone so it was easier to change my diet. Once I was on HEMO dialysis I had to change my diet again. I received HEMO dialysis 4 days a week, not the usual 3, in the evening. I was home by midnight, ate – so I could take my meds, went to bed, and felt great in the morning. In 2008 I received a transplant and my diet had to change again. If your family and friends will not help you and honor the changes in your life that you will have to make, I would never eat at their table. I have blood work every 6 weeks now, had my annual check-up less than a month ago and my kidney is doing very well. (I think I had 4 matches, I do not remember it has been so long.)

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@mlmcg

I was told in 1999 I had end stage renal failure, at that time you would be on dialysis in the next 6-9 months. I was able to start my HEMO dialysis in 2003 because the only way I knew I could help my kidneys stay well was by what I put in my mouth. Some foods are your kidneys friends and some foods destroy your kidneys. I live alone so it was easier to change my diet. Once I was on HEMO dialysis I had to change my diet again. I received HEMO dialysis 4 days a week, not the usual 3, in the evening. I was home by midnight, ate – so I could take my meds, went to bed, and felt great in the morning. In 2008 I received a transplant and my diet had to change again. If your family and friends will not help you and honor the changes in your life that you will have to make, I would never eat at their table. I have blood work every 6 weeks now, had my annual check-up less than a month ago and my kidney is doing very well. (I think I had 4 matches, I do not remember it has been so long.)

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@mlmcg – May I ask why you were in ESRD and what foods are bad for your kidneys? I am also in ESRD (stage 4a) and am on a low protein and low sodium diet. I avoid caffeine and alcohol also. PKD has a slow progression but mine has increased in speed the past few years. Thanks for sharing your story and I’m pleased to hear that your transplant is doing well. Did you receive a kidney from a living or deceased donor?

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@mlmcg

I was told in 1999 I had end stage renal failure, at that time you would be on dialysis in the next 6-9 months. I was able to start my HEMO dialysis in 2003 because the only way I knew I could help my kidneys stay well was by what I put in my mouth. Some foods are your kidneys friends and some foods destroy your kidneys. I live alone so it was easier to change my diet. Once I was on HEMO dialysis I had to change my diet again. I received HEMO dialysis 4 days a week, not the usual 3, in the evening. I was home by midnight, ate – so I could take my meds, went to bed, and felt great in the morning. In 2008 I received a transplant and my diet had to change again. If your family and friends will not help you and honor the changes in your life that you will have to make, I would never eat at their table. I have blood work every 6 weeks now, had my annual check-up less than a month ago and my kidney is doing very well. (I think I had 4 matches, I do not remember it has been so long.)

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Thank you for your interest, I was diagnosed with stage 4 lymphoma in 1975. I had 4+ years of chemo and 6 weeks of radiation on my lower abdomen. (I am now cancer free.) The radiation damaged part of my bladder, my kidneys and bladder share everything including the radiation. Because of the radiation I was diagnosed with ESRD in 1999. Animal protein and organ meats can destroy kidneys, so I went to a vegetable diet, getting my protein from plants, some fish, eggs and yogurt. At that time I had been on a low sodium, low sugar and low fat diet for over 10 years. I have never liked coffee and gave up alcohol about the time I was having chemo or shortly there after. My donor was in one hospital when she died and I had my transplant in another hospital about an hour away, both are well known university hospitals. If I was unable to answer all of your questions, I will try to do better next time.
mlmcg

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@mlmcg

I was told in 1999 I had end stage renal failure, at that time you would be on dialysis in the next 6-9 months. I was able to start my HEMO dialysis in 2003 because the only way I knew I could help my kidneys stay well was by what I put in my mouth. Some foods are your kidneys friends and some foods destroy your kidneys. I live alone so it was easier to change my diet. Once I was on HEMO dialysis I had to change my diet again. I received HEMO dialysis 4 days a week, not the usual 3, in the evening. I was home by midnight, ate – so I could take my meds, went to bed, and felt great in the morning. In 2008 I received a transplant and my diet had to change again. If your family and friends will not help you and honor the changes in your life that you will have to make, I would never eat at their table. I have blood work every 6 weeks now, had my annual check-up less than a month ago and my kidney is doing very well. (I think I had 4 matches, I do not remember it has been so long.)

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@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.

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@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

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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 – 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.

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