1. < Transplants

What are your post kidney transplant lab and follow-up schedules?

Posted by caretakermom @caretakermom, Aug 6, 2022

Hello,
My husband got a kidney transplant at Az Mayo Clinic about 5 months ago and we live in a different state. So routine after care is done locally unless it's 4, 8, 12, and monthly follow up at Mayo. My question is, after the 3rd month post transplant what is the recommended routine post kidney transplant lab schedules and follow ups with your nephrologists in the first 1-5 years?

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

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 7, 2022

Regarding my routine labs.
My transplant team writes me a "Standing Lab Order" each year as part of my annual evaluation. They include a message to me about the lab schedule. My local PCP has to rewrite the lab order because it was written out of state. I keep a copy filed at my PCP's office and at the local lab where I have my routine labs drawn. My Mayo transplant nurse also keeps me supplied with the Prograf Kits. I like this management because it puts me in charge of my labs. If I need an extra lab drawn, I can readily go without the need to contact my PCP. He is happy to support Mayo's care plan.

REPLY
1 reply
caretakermom | @caretakermom | Aug 7, 2022
In reply to @rosemarya "Regarding my routine labs. My transplant team writes me a "Standing Lab Order" each year as..." + (show)
@rosemarya

Regarding my routine labs.
My transplant team writes me a "Standing Lab Order" each year as part of my annual evaluation. They include a message to me about the lab schedule. My local PCP has to rewrite the lab order because it was written out of state. I keep a copy filed at my PCP's office and at the local lab where I have my routine labs drawn. My Mayo transplant nurse also keeps me supplied with the Prograf Kits. I like this management because it puts me in charge of my labs. If I need an extra lab drawn, I can readily go without the need to contact my PCP. He is happy to support Mayo's care plan.

Jump to this post

Rosemary,

I like the way Mayo in Rochester runs the routine labs for patients out of state. At Mayo Az, they do not give us a standing order nor do we get a Prograf kit for routine labs. The local neph is in charge of ordering the labs and the schedule of lab draws. Mayo Az will only intervene if hubby develops something like CMV, BKV, some illness related to transplant. So they are currently managing him because he got CMV but is resolving. So I fully expect them to turn over management of hubby to his local neph any day now. I have previously asked the nurse coordinator if she would give us a standing lab order long term but she said they do not do that. They have guidelines for the rountine lab schedule but it's really up to the managing doctor what he wants to do. I'm going to bring it up again and ask if they would give me a lab order that I can take to the local neph and say to him this is what Mayo recommends. I hope he agrees to it.

REPLY
cmael | @cmael | Aug 8, 2022
In reply to @rosemarya "@caretakermom, Congratulations to you and your husband in honor of his kidney transplant! I also live..." + (show)
@rosemarya

@caretakermom, Congratulations to you and your husband in honor of his kidney transplant!

I also live in a different state from Mayo Rochester where I received my transplant. My transplant was in 2009, and in the beginning, my labs were drawn weekly, bi weekly, monthly, and gradually to my current spacing. My current routine lab schedule is every 3 months - unless there is a medicine change or a medical condition that requires it. I will be on this schedule for life. My labs are drawn locally and sent to my PCP and my transplant department. There is also a Mail-in kit to monitor my tacrolimus level.
I return to Mayo annually for my evaluation. I have a liver and a kidney trans[plant. My kidney failure was caused by my liver failure (hepatorenal failure) and so I do not have a local nephrologist.
I also had a biopsy at 4 months, and years 1, 2, 5, and 10. It is entirely possible that your husband will be on a schedule that is matched to his own needs.

What has his transplant team said about his follow-up care and labs?

Jump to this post

It’s been 4 years since my transplant. I also don’t have a local nephrologist, but if needed I suppose I could go back to the last one that I saw before my transplant. She had told me at the last appointment before my transplant that Mayo would be keeping a close eye on me when I asked if I’d be seeing her again. I have a local PCP. There’s an open network between both providers. My labs are done at a local medical center every 3 months. They were done monthly for the first year, then changed to every 3 months. Then the BK virus showed up. My Cellcept was lowered to 500 mgs twice daily from 700 twice daily. Back to monthly labs. The virus slowly lowered in my labs and after many months disappeared.
I had a biopsy done shortly after my transplant because I was showing signs of rejection. Steroid infusions corrected that problem. Then I had another biopsy at 4 months and 1 year. The second year I didn’t have one because I’d forgotten to stop my daily aspirin soon enough. I haven’t had a biopsy since. I was scheduled for one at my 4 year checkup but she gave me a choice. She said that I was doing so well, she was fine with me skipping it since there are risks with it, too. All of my blood work, except glucose, comes back in the normal range.

REPLY
2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 9, 2022
In reply to @cmael "It’s been 4 years since my transplant. I also don’t have a local nephrologist, but if..." + (show)
@cmael

It’s been 4 years since my transplant. I also don’t have a local nephrologist, but if needed I suppose I could go back to the last one that I saw before my transplant. She had told me at the last appointment before my transplant that Mayo would be keeping a close eye on me when I asked if I’d be seeing her again. I have a local PCP. There’s an open network between both providers. My labs are done at a local medical center every 3 months. They were done monthly for the first year, then changed to every 3 months. Then the BK virus showed up. My Cellcept was lowered to 500 mgs twice daily from 700 twice daily. Back to monthly labs. The virus slowly lowered in my labs and after many months disappeared.
I had a biopsy done shortly after my transplant because I was showing signs of rejection. Steroid infusions corrected that problem. Then I had another biopsy at 4 months and 1 year. The second year I didn’t have one because I’d forgotten to stop my daily aspirin soon enough. I haven’t had a biopsy since. I was scheduled for one at my 4 year checkup but she gave me a choice. She said that I was doing so well, she was fine with me skipping it since there are risks with it, too. All of my blood work, except glucose, comes back in the normal range.

Jump to this post

@cmael, Your after transplant care sounds very similar to mine. I am happy to hear that you are doing well.
I guess I assumed that everyone had the same follow-up plan.

REPLY
hello1234 | @hello1234 | Aug 10, 2022
In reply to @cmael "It’s been 4 years since my transplant. I also don’t have a local nephrologist, but if..." + (show)
@cmael

It’s been 4 years since my transplant. I also don’t have a local nephrologist, but if needed I suppose I could go back to the last one that I saw before my transplant. She had told me at the last appointment before my transplant that Mayo would be keeping a close eye on me when I asked if I’d be seeing her again. I have a local PCP. There’s an open network between both providers. My labs are done at a local medical center every 3 months. They were done monthly for the first year, then changed to every 3 months. Then the BK virus showed up. My Cellcept was lowered to 500 mgs twice daily from 700 twice daily. Back to monthly labs. The virus slowly lowered in my labs and after many months disappeared.
I had a biopsy done shortly after my transplant because I was showing signs of rejection. Steroid infusions corrected that problem. Then I had another biopsy at 4 months and 1 year. The second year I didn’t have one because I’d forgotten to stop my daily aspirin soon enough. I haven’t had a biopsy since. I was scheduled for one at my 4 year checkup but she gave me a choice. She said that I was doing so well, she was fine with me skipping it since there are risks with it, too. All of my blood work, except glucose, comes back in the normal range.

Jump to this post

Hi @cmael 😊
I am celebrating my two year post kidney transplant anniversary this month. I read your excellent and very detailed post regarding your test and lab schedule after transplant. I saw that you mentioned you had a biopsy early after transplant because there were signs of rejection. I am curious to know what signs or symptoms did you experience during that period of time? Also, are you still on 500mg bid of Cellcept and Tacronlimis or something else?
Thanks so much for sharing!

REPLY
cmael | @cmael | Aug 11, 2022

Hi @hello1234
I didn’t have any symptoms from the signs of rejection, but my creatinine level started to go up. I don’t remember the number. The doctor said that I was showing signs of rejection. I am still taking 500 mgs of Cellcept bid and 1 mg of tacrolimus bid, along with 5 mgs of Prednisone 1 time a day. I also take bp meds and 1/2 Bactrim at bedtime to prevent infections.

REPLY
1 reply
hello1234 | @hello1234 | Aug 11, 2022
In reply to @cmael "Hi @hello1234 I didn’t have any symptoms from the signs of rejection, but my creatinine level..." + (show)
@cmael

Hi @hello1234
I didn’t have any symptoms from the signs of rejection, but my creatinine level started to go up. I don’t remember the number. The doctor said that I was showing signs of rejection. I am still taking 500 mgs of Cellcept bid and 1 mg of tacrolimus bid, along with 5 mgs of Prednisone 1 time a day. I also take bp meds and 1/2 Bactrim at bedtime to prevent infections.

Jump to this post

Thanks for the scoop @cmael 😊 I am very happy to hear that all is well and going great now! During my CMV virus, my Cellcept was also lowered to 500mg bid and I have been on that dose ever since along with Tacronlimis. So far, I haven't had any signs of rejection, but of course it's always a concern. It sounds like they have you on the right "cocktail" of maintenance meds and everything is working well now.... Great news!! 👌

REPLY
View MoreView Less
Please sign in or register to post a reply.