Is a kidney transplant worth it?

Posted by rhanea @rhanea, Sep 8, 2023

I’m in kidney failure, stage 5, eGFR 11.I’m being evaluated for a kidney transplant. I’m type diabetic have. ,
Osteoporosis high blood pressure, Hyperparathyroidism, an undiagnosed nervous system disorder that has plagued me for 9 years, that leaves m. e in constant pain, weak and in a wheelchair. How bad is dialysis?

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@rhanea

My diabetes is well controlled. My A1C has been 5 to 5.4 for a while. I’m a type 1 using an insulin pump almost since diagnosis.
My blood pressure is also controlled with medication. I also know how hard a diet is with multiple issues. On top of those that are obvious I also have celiac. My transplant dr told me I was very frail, said it was a 50/50 chance and couldn’t guarantee it would improve my life. It is up to me. So, I’m waiting for a scan to see if my veins and arteries are healthy enough for the transplant. I don’t know if I want to do either. It doesn’t seem that there is a good choice. Maybe I should just do the best I can with diet. How did you get your kidneys to work bette? I didn’t think that was possible? Thanks for responding. I truly appreciate it.

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@rhanea I also want to welcome you to Mayo Clinic Connect. We have some things in common. I have diabetes, hypertension, osteoporosis and chronic kidney disease (CKD stage 4). I have had pre-transplant evaluation for kidney transplant. I was approved & accepted for kidney transplant at Mayo Clinic in Rochester, MN. I’ve also been researching and learning about dialysis.
How far along are you in the transplant evaluation? You said that your transplant dr told you you are very frail. I underwent an examination to determine my frailty as part of my transplant evaluation. You mentioned waiting for a scan to assess your veins and arteries for transplant. When I had this it was called “vascular access” and was more about deciding whether dialysis or transplant was a better option for me.
As to whether transplant is worth it, I am a huge fan of transplant. It appeals to my belief in recycling! Nearly 18 years ago I had a pancreas transplant. It was like my own personal miracle and had a great run for 11 years. But that is a different story.
My hope and prayer for you is that you have a complete, thorough pre-transplant evaluation. Get all the options presented to you (risks and benefits) plus all your questions and concerns answered. You are the most important part of the medical team. Your decision and what is best for you matters.

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@cehunt57

@rhanea I also want to welcome you to Mayo Clinic Connect. We have some things in common. I have diabetes, hypertension, osteoporosis and chronic kidney disease (CKD stage 4). I have had pre-transplant evaluation for kidney transplant. I was approved & accepted for kidney transplant at Mayo Clinic in Rochester, MN. I’ve also been researching and learning about dialysis.
How far along are you in the transplant evaluation? You said that your transplant dr told you you are very frail. I underwent an examination to determine my frailty as part of my transplant evaluation. You mentioned waiting for a scan to assess your veins and arteries for transplant. When I had this it was called “vascular access” and was more about deciding whether dialysis or transplant was a better option for me.
As to whether transplant is worth it, I am a huge fan of transplant. It appeals to my belief in recycling! Nearly 18 years ago I had a pancreas transplant. It was like my own personal miracle and had a great run for 11 years. But that is a different story.
My hope and prayer for you is that you have a complete, thorough pre-transplant evaluation. Get all the options presented to you (risks and benefits) plus all your questions and concerns answered. You are the most important part of the medical team. Your decision and what is best for you matters.

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@rhanea, one more thing ….. during the course of your transplant evaluation I hope and pray that that your team can get to the bottom of the”undiagnosed nervous system disorder that has plagued you for 9 years” and figure out a plan to help you with that. That would be a blessing for you!

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@cehunt57

@rhanea, one more thing ….. during the course of your transplant evaluation I hope and pray that that your team can get to the bottom of the”undiagnosed nervous system disorder that has plagued you for 9 years” and figure out a plan to help you with that. That would be a blessing for you!

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@cehunt57
Thank you Cheryl for your reply. I guess my transplant dr was telling me that it was up to me. But couldn’t guarantee that it was going to h
Elo improve my life, and that it could be worse. I was overwhelmed by the whole process as it was. Hearing him say that my life could be worse scared me. I wanted to have that scan first before I made a decision because I didn’t want to have them turn me down later. The scan is to check the veins and arteries that connect the bladder and kidneys. I should have asked questions like how would I make my life worse?

To be honest, I’m not sure if I want to do anything. I am getting tired and sometimes I feel like my body wants to kill me! My husband doesn’t get tired I have to have the transplant or dialysis or I WILL die. He doesn’t get that what I eat matters. And why I am getting weather, harder to get around and why I fall asleep every time I’m still for a minute.

I try to remember that I’m depressed and that affects my thinking. I don’t know.

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@rhanea if you are in the midst of a transplant evaluation you should be thoroughly examined head to toe. Your medical history, conditions, treatments, medications will be reviewed. This includes osteoporosis, high blood pressure, hyperparathyroidism, nervous system, pain, frailty, mental health (depression), nutritionist / dietician ….. etc. (all things you have mentioned that you struggle with). A social worker will likely speak with you and your husband to assess whether your expectations regarding potential transplant are compatible. You will be required to have a post transplant caregiver (and maybe even a backup) who will also be evaluated to ensure that your recovery goes smoothly. All this plus the support of your local medical providers is important for a successful transplant. Could you provide an update on your progress on this journey?

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