Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Post Kidney Transplant Issues

I know that this is not a post kidney transplant group but there is not one that I have found on here. Have any of you experienced post kidney transplant issues with prograf? My husband was just transplanted on new year's day and his creatinine keeps rising then falling based on the prograf level. We are worried and keep getting the same discouraging responses from the transplant team. They just say they don't know why his creatinine is rising to 2.29 when the prograf level is 12.1 because that is not a high level. Any insight is appreciated.

Replies

deleted_user
deleted_user

I'm sorry about the fluctuating creatinine level. Mine did not fluctuate despite changes in my prograf level so I am sorry that I can't help with this question. You might get answers from a few of the other transplant patients here. I also recommend checking out www.transplantbuddies.com The forums there are very helpful for specific health questions, although I find this one to be the very best for support.

I hope you get some answers to your questions.
deleted_user
deleted_user

your husband's transplant is very new and may need time to adjust.
they say Prograf will eventually cause some rise in creatinine and mine has gone up in the nearly 7 years since my transplant, starting at .6 and fluctuating between .7 and .9 but there are other things that affect creatinine too. not drinking enough water can elevate it, any illness or infection will do that too.
do you know anything about the donor? can it be the kidney was impaired in some way?
you are welcome here with your questions, PKD or not. we have many with transplants who will be glad to help.
CHeatherS
CHeatherS

Yes, do check out Transplant buddies forum.

Also, make sure that he drinks a lot of water, and especially the day before he does labs. Also, make sure that he is getting labs for BK virus.

I had my transplant the end of August, and it was up and down for a while as well.

Are you close to your transplant center so that you can ask a lot of questions?

Let us know how he is doing..... on Transplant Buddies, I am Alaskagal. Hope to see you there.

Heather
Jennie123
Jennie123

Hello,

Being the patient of Kidney transplant, I would recommend davita dot com/treatment-options/transplant this will help you in a better way.
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