1. < Transplants

To pursue a preemptive kidney transplant or wait?

Posted by robertstl @robertstl, Apr 3 4:17pm

I am wrestling with a decision to continue to either be waitlisted for a kidney transplant (4 years on list so far) or possibly wait until remaining kidney finally fails.
Some background. I'm 71 years old in good health (besides kidney). I went through cancer in 2020 and lost a kidney, bladder, prostate and urethra along the journey. So now I have to have an Ileal conduit procedure (major surgery to have "plumbing" in place for both kidneys in advance of transplant. I am currently near top of transplant list. My native kidney has been running at an eGFR of 11 for the last two years. (Just slipped to 8 in last blood draw) All other chemical issues (phosphorus, potassium and sodium) in in normal range or just slightly above). It generates 2 -3 liter's per day.
So, in consulting several of my doctors I am left with conflicting thoughts as to how to best proceed.
I could do nothing for now and see how long the native kidney lasts. (So far 4 years and counting without dialysis. Maybe live out the rest of my days with a somewhat reduced quality of life. Or I can get the "plumbing" procedure and then after healing a new kidney. But then my existing kidney may not survive two major surgeries, or it might and the transplant may not last. In either case it's dialysis or the adjusted lifestyle of a post-transplant patient would be the case.

If you are post-transplant have you been happy with the decision? Have all the inconveniences you have to deal with of living after transplant still been worth your decision to get one? Can I expect an improved quality of life after transplant enough to risk a worst-case outcome and end up on dialysis.

Sorry for the rambling. At the very least I could use your prayers.

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

Mentor
Ginger, Volunteer Mentor | @gingerw | Apr 3 7:24pm

@robertstl Welcome to Mayo Clinic Connect. You certainly have some interesting decisions in front of you.

1. Have your doctors told you about the "plumbing procedure" to be done, what it entails and what the recovery time is? If this needs to be done prior to kidney transplant, have you thought about what would happen if you go into sudden kidney failure? How would it all be handled? Can dialysis be done with the remaining kidney and without having the procedure?

My husband had a kidney transplant at age 61, receiving a deceased donor's gift. Until you get a transplant, it is hard to realize how much better your quality of life is. Yes, there is the period of adjustment to new [lifelong] medications and recovery. Yes, there is the possibility of some complications. The vast majority of folks do not have a lot of issues.

Living with one kidney, that one kidney is now functioning at 8%. I imagine your quality of life is definitely not what it used to be, and nowhere near what it could be after a successful transplant. You are the only one who can truthfully answer the question of improved quality of your life. Being on the wait-list now for four years, what will you do if they call next week and tell you there is a kidney available to you?
Ginger

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1 reply
robertstl | @robertstl | Apr 4 9:57am
In reply to @gingerw "@robertstl Welcome to Mayo Clinic Connect. You certainly have some interesting decisions in front of you...." + (show)
@gingerw

@robertstl Welcome to Mayo Clinic Connect. You certainly have some interesting decisions in front of you.

1. Have your doctors told you about the "plumbing procedure" to be done, what it entails and what the recovery time is? If this needs to be done prior to kidney transplant, have you thought about what would happen if you go into sudden kidney failure? How would it all be handled? Can dialysis be done with the remaining kidney and without having the procedure?

My husband had a kidney transplant at age 61, receiving a deceased donor's gift. Until you get a transplant, it is hard to realize how much better your quality of life is. Yes, there is the period of adjustment to new [lifelong] medications and recovery. Yes, there is the possibility of some complications. The vast majority of folks do not have a lot of issues.

Living with one kidney, that one kidney is now functioning at 8%. I imagine your quality of life is definitely not what it used to be, and nowhere near what it could be after a successful transplant. You are the only one who can truthfully answer the question of improved quality of your life. Being on the wait-list now for four years, what will you do if they call next week and tell you there is a kidney available to you?
Ginger

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Ginger, Thank you for reply and insights. Recovery from the Ileal conduit procedure I'm told is 3-4 weeks. The Transplant team would much prefer me to have this done in advance of a transplant. Yes, I can undergo dialysis with my existing kidney if needed. Currently if my native kidney were to fail, I would have to go back to dialysis. (I was on dialysis for 18 months 3 years ago). Either my existing graft would be used (it needs to be unblocked from lack of usage) or in an emergency I would have to have a port added. If they were to call next week and offer a kidney, we would need to have both procedures done at the same time. The Transplant Team can do this but would prefer not to.
I hope your husband and you are enjoying an improved QoL after his transplant. I have read a number of post-transplant stories online that give me hope I can go through all of this and do the same. Thanks for your input. It is truly appreciated.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Apr 6 11:33am
In reply to @robertstl "Ginger, Thank you for reply and insights. Recovery from the Ileal conduit procedure I'm told is..." + (show)
@robertstl

Ginger, Thank you for reply and insights. Recovery from the Ileal conduit procedure I'm told is 3-4 weeks. The Transplant team would much prefer me to have this done in advance of a transplant. Yes, I can undergo dialysis with my existing kidney if needed. Currently if my native kidney were to fail, I would have to go back to dialysis. (I was on dialysis for 18 months 3 years ago). Either my existing graft would be used (it needs to be unblocked from lack of usage) or in an emergency I would have to have a port added. If they were to call next week and offer a kidney, we would need to have both procedures done at the same time. The Transplant Team can do this but would prefer not to.
I hope your husband and you are enjoying an improved QoL after his transplant. I have read a number of post-transplant stories online that give me hope I can go through all of this and do the same. Thanks for your input. It is truly appreciated.

Jump to this post

@robertstl Yes, my husband is ever-so-thankful for his gift of a new kidney. It has allowed him to see his grandchildren grow up into adults, and continue to give more time to volunteer activities. Being fully retired now, he has quite the laundry list of projects!

While I am not in your situation, to me, having the ileal conduit procedure now would offer the opportunity to address any complications or concerns that might present themselves. Yes, that would mean two different major surgeries in the same area, possibly within a short period of time, but might be most beneficial for you and the rest of your team. I like to remember that I am part of my medical team, and as the "hub of the wheel", which the patient is, the communication between everyone is of utmost importance.
Ginger

REPLY
stephanierp | @stephanierp | Apr 9 12:04pm

Hello,
I had a preemptive live kidney donor transplant five years ago, at the age of 54. I did not have "plumbing" surgery you are referring to, so I cannot speak to that. As of the transplant, I have had surprisingly few adjustments with mine. Yes, there are immune-therapy meds to contend with, however my doses are relatively low and therefore I have few side-effects thus far. I had my surgery done when I was at 10% kidney function and I felt horrible - weak, breathless, not peeing, brain fog, inability to do much of anything. And you are at 8%, I can scarcely imagine what you must be feeling. Ultimately, you must decide what you believe to be the best plan of action for yourself, along with your doctors. As for me, I highly recommend a transplant. I continue to feel very good with mine. Sending healing and strength and best wishes.

REPLY
1 reply
robertstl | @robertstl | Apr 10 11:18am
In reply to @stephanierp "Hello, I had a preemptive live kidney donor transplant five years ago, at the age of..." + (show)
@stephanierp

Hello,
I had a preemptive live kidney donor transplant five years ago, at the age of 54. I did not have "plumbing" surgery you are referring to, so I cannot speak to that. As of the transplant, I have had surprisingly few adjustments with mine. Yes, there are immune-therapy meds to contend with, however my doses are relatively low and therefore I have few side-effects thus far. I had my surgery done when I was at 10% kidney function and I felt horrible - weak, breathless, not peeing, brain fog, inability to do much of anything. And you are at 8%, I can scarcely imagine what you must be feeling. Ultimately, you must decide what you believe to be the best plan of action for yourself, along with your doctors. As for me, I highly recommend a transplant. I continue to feel very good with mine. Sending healing and strength and best wishes.

Jump to this post

Thank you for insights. I plan to pursue the transplant now instead of waiting. Many responses such as yours gives me the confidence to pursue a better QoL than I have today.

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 13 9:01pm
In reply to @robertstl "Thank you for insights. I plan to pursue the transplant now instead of waiting. Many responses..." + (show)
@robertstl

Thank you for insights. I plan to pursue the transplant now instead of waiting. Many responses such as yours gives me the confidence to pursue a better QoL than I have today.

Jump to this post

@robertstl, Hi Robert, I've been following your difficult decision making process, and I think that you are making a wise choice so that you are prepared ahead of time should you need that transplant. I will be thinking of you and hoping for everything to work out positively.
I was 60 when I received my liver and kidney transplant. That was 16 years ago.

What is your next step? Has your nephrologist made a referral?

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