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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@IWantToBelieve

@sevkira – I’m just joining this chat and saw your first question. I am due for a kidney transplant in about a year and hope to get one from a living donor. Of course every situation is different (I have PKD) and you should go by what the doctors say about your health but it is my understanding that a transplant is the better option if you are destined to be on dialysis. Dialysis, according to my research, only does 10% of the job of your kidney. A kidney transplant will give you a more complete/normal life. Furthermore, a transplant from a living donor may be preferable, if that is an option, because they last longer and usually start to work immediately. You are right, surgery has risks but dialysis is not without complications either so I would ask about the long term effects of dialysis (heart problems and being able to drink very little liquid are just two issues with dialysis). Either way you decide it is a big decision but Mayo will be a great source of information and will educate you with what is best in your circumstance. Best of luck!

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I’ve had both PD and HEMO dialysis, I started on PD first and did very well, I had a machine that I used at home to do the exchanges ( PD is different from HEMO in that you exchange a dextrose solution through a tube in the peritoneal cavity) HEMO uses a shunt connecting an artery with a vein and insert needles to circulate your blood through a filter to clean , I was on HEMO for 13 years and it was very taxing on my body, but I had had three prior kidney transplants……long and short of it, a transplant is always, in my opinion the best option and obviously, living donor is best but with today’s technology and drugs a good cross match is what it comes down to and good doctors.

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@IWantToBelieve

@sevkira – I’m just joining this chat and saw your first question. I am due for a kidney transplant in about a year and hope to get one from a living donor. Of course every situation is different (I have PKD) and you should go by what the doctors say about your health but it is my understanding that a transplant is the better option if you are destined to be on dialysis. Dialysis, according to my research, only does 10% of the job of your kidney. A kidney transplant will give you a more complete/normal life. Furthermore, a transplant from a living donor may be preferable, if that is an option, because they last longer and usually start to work immediately. You are right, surgery has risks but dialysis is not without complications either so I would ask about the long term effects of dialysis (heart problems and being able to drink very little liquid are just two issues with dialysis). Either way you decide it is a big decision but Mayo will be a great source of information and will educate you with what is best in your circumstance. Best of luck!

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@ca426 – It sounds like you have been through a lot! Although I don’t want your experience, your story gives me hope that I will be able to manage my upcoming transplant. Best of health to you.

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@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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