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

Posted by caretakermom @caretakermom, Aug 6 9:48am

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?

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@caretakermom Congratulations to your husband on his transplant. And congratulations with a pat on the back to you as his caretaker!

The questions you pose would be best answered by his transplant team from Mayo Arizona. You may be able to go on to the patient portal and get these guidelines based on his individual circumstances. Let me know if you are successful in getting the information you are looking for, okay?

How is your husband doing with his new kidney?
Ginger

REPLY

@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?

REPLY
@gingerw

@caretakermom Congratulations to your husband on his transplant. And congratulations with a pat on the back to you as his caretaker!

The questions you pose would be best answered by his transplant team from Mayo Arizona. You may be able to go on to the patient portal and get these guidelines based on his individual circumstances. Let me know if you are successful in getting the information you are looking for, okay?

How is your husband doing with his new kidney?
Ginger

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Hi,
My husband has recently got CMV but is resolving. There are just a few more issues in his labs that are abnormal but hoping they too will resolve soon. His labs are improving since the manifestation of CMV. So currently Mayo is currently following my husband, though we are still consulting with local neph. We are from out of state.
I have already asked Mayo Az about what the standard lab schedules should be post transplant but was told it's really up to the doctor. And that is our issue. We don't think the labs are being done frequent enough for someone who is less than 1 year post transplant. My husband was getting labs once a month under this neph. So I was just wondering what are other people's experience.

REPLY
@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

Hi Rosemary,
Congrats on keeping your liver and kidney transplant for over 10 years!!! My issue is the transplant care after we got home from Mayo Az. At the time of dismissal we were told by Mayo that we needed to find a doctor within 30 days who is willing to follow hubby. So a local neph/PCP would follow hubby unless something happens like CMV, BKV, etc. Well hubby got CMV 2 months after he got home and Mayo stepped in to manage and the CMV looks like it's resolving. With Mayo managing we have a standing lab order and we do labs weekly. However, prior to CMV when local neph was managing, he was ordering labs once a month. The local neph is one of hubby's nephs pre transplant so we know him as a dialysis neph. He currently manages hubby like he would a post transplant patient who has been stable beyond the first year. He orders labs monthly and consults with hubby monthly to go over labs. Once a month may be sufficient for a dialysis patient but I don't think it's enough to monitor the various labs such as Tacrolimus, WBC, CMV, etc, in the early stages of post transplant. Because levels fluctuate quite a bit in the beginning, frequent labs are necessary to adjust medications. Once meds are adjusted labs need to be drawn again to check for appropriate levels and it's not something that can wait till next month. The local neph is a good guy and very knowledgable about blood pressure and kidney diseases but he just doesn't spend time frequently enough to monitor someone who is fairly new post transplant. I think the neph is just overwhelmed with work from different venues that he just doesn't have a lot of time to devote to each patient. He runs a private practice part-time, he is a medical director at one of the DaVitas, and makes rounds at 2 of the local hospitals, plus he has a different side venture he's involved in. It's extremely difficult to get a hold of him and I'm just very concerned that if my hubby needs something right away, that he's not going to be there to support us. His office staff is the worse, they don't return calls and they take the phones off the hook during lunch hours so you cannot even leave a message. When you do get someone on the phone, the respond is inevitably "you have to talk to the doctor". Well we're calling because we want to leave a msg with doctor but the inquiry is never responded and we have to call back. Overall the office staff is just terrible. Where we live it's very difficult to find a good nephrologist who will accept new patients. What is more concerning is that when we consulted with the local neph(a few days ago), he suggested to do labs once every 2 months. At first he wanted to do once every 3 months but when he found out Mayo is still following hubby he changed to 2 months!! Keep in mind that my hubby is only about 5 months post. I'm just very confused as to what is the appropriate lab schedule for a post txplant patient under 1 year. I'm sorry for ranting but just want to know other's experience is.

REPLY
@caretakermom

Hi Rosemary,
Congrats on keeping your liver and kidney transplant for over 10 years!!! My issue is the transplant care after we got home from Mayo Az. At the time of dismissal we were told by Mayo that we needed to find a doctor within 30 days who is willing to follow hubby. So a local neph/PCP would follow hubby unless something happens like CMV, BKV, etc. Well hubby got CMV 2 months after he got home and Mayo stepped in to manage and the CMV looks like it's resolving. With Mayo managing we have a standing lab order and we do labs weekly. However, prior to CMV when local neph was managing, he was ordering labs once a month. The local neph is one of hubby's nephs pre transplant so we know him as a dialysis neph. He currently manages hubby like he would a post transplant patient who has been stable beyond the first year. He orders labs monthly and consults with hubby monthly to go over labs. Once a month may be sufficient for a dialysis patient but I don't think it's enough to monitor the various labs such as Tacrolimus, WBC, CMV, etc, in the early stages of post transplant. Because levels fluctuate quite a bit in the beginning, frequent labs are necessary to adjust medications. Once meds are adjusted labs need to be drawn again to check for appropriate levels and it's not something that can wait till next month. The local neph is a good guy and very knowledgable about blood pressure and kidney diseases but he just doesn't spend time frequently enough to monitor someone who is fairly new post transplant. I think the neph is just overwhelmed with work from different venues that he just doesn't have a lot of time to devote to each patient. He runs a private practice part-time, he is a medical director at one of the DaVitas, and makes rounds at 2 of the local hospitals, plus he has a different side venture he's involved in. It's extremely difficult to get a hold of him and I'm just very concerned that if my hubby needs something right away, that he's not going to be there to support us. His office staff is the worse, they don't return calls and they take the phones off the hook during lunch hours so you cannot even leave a message. When you do get someone on the phone, the respond is inevitably "you have to talk to the doctor". Well we're calling because we want to leave a msg with doctor but the inquiry is never responded and we have to call back. Overall the office staff is just terrible. Where we live it's very difficult to find a good nephrologist who will accept new patients. What is more concerning is that when we consulted with the local neph(a few days ago), he suggested to do labs once every 2 months. At first he wanted to do once every 3 months but when he found out Mayo is still following hubby he changed to 2 months!! Keep in mind that my hubby is only about 5 months post. I'm just very confused as to what is the appropriate lab schedule for a post txplant patient under 1 year. I'm sorry for ranting but just want to know other's experience is.

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@caretakermom Is there a teaching hospital that is near enough to you to consider? What about a transplant center within a reasonable distance that would work with Mayo Clinic?

Here is a link to Mayo Healthcare Systems that may be of use to you? https://www.mayoclinichealthsystem.org/
Also here is a link to Mayo Clinic Care Network that shows member facilities: https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

After looking into both of these, will you let me know if they were of any help, please?
Ginger

REPLY
@caretakermom

Hi Rosemary,
Congrats on keeping your liver and kidney transplant for over 10 years!!! My issue is the transplant care after we got home from Mayo Az. At the time of dismissal we were told by Mayo that we needed to find a doctor within 30 days who is willing to follow hubby. So a local neph/PCP would follow hubby unless something happens like CMV, BKV, etc. Well hubby got CMV 2 months after he got home and Mayo stepped in to manage and the CMV looks like it's resolving. With Mayo managing we have a standing lab order and we do labs weekly. However, prior to CMV when local neph was managing, he was ordering labs once a month. The local neph is one of hubby's nephs pre transplant so we know him as a dialysis neph. He currently manages hubby like he would a post transplant patient who has been stable beyond the first year. He orders labs monthly and consults with hubby monthly to go over labs. Once a month may be sufficient for a dialysis patient but I don't think it's enough to monitor the various labs such as Tacrolimus, WBC, CMV, etc, in the early stages of post transplant. Because levels fluctuate quite a bit in the beginning, frequent labs are necessary to adjust medications. Once meds are adjusted labs need to be drawn again to check for appropriate levels and it's not something that can wait till next month. The local neph is a good guy and very knowledgable about blood pressure and kidney diseases but he just doesn't spend time frequently enough to monitor someone who is fairly new post transplant. I think the neph is just overwhelmed with work from different venues that he just doesn't have a lot of time to devote to each patient. He runs a private practice part-time, he is a medical director at one of the DaVitas, and makes rounds at 2 of the local hospitals, plus he has a different side venture he's involved in. It's extremely difficult to get a hold of him and I'm just very concerned that if my hubby needs something right away, that he's not going to be there to support us. His office staff is the worse, they don't return calls and they take the phones off the hook during lunch hours so you cannot even leave a message. When you do get someone on the phone, the respond is inevitably "you have to talk to the doctor". Well we're calling because we want to leave a msg with doctor but the inquiry is never responded and we have to call back. Overall the office staff is just terrible. Where we live it's very difficult to find a good nephrologist who will accept new patients. What is more concerning is that when we consulted with the local neph(a few days ago), he suggested to do labs once every 2 months. At first he wanted to do once every 3 months but when he found out Mayo is still following hubby he changed to 2 months!! Keep in mind that my hubby is only about 5 months post. I'm just very confused as to what is the appropriate lab schedule for a post txplant patient under 1 year. I'm sorry for ranting but just want to know other's experience is.

Jump to this post

I can understand fully & sympathize with what you are going through, (My kidney transplant was out of state too)
I went through the same dilemma – with lot of turmoil in my head !
Try to find a Transplant nephrologist (some one who has done a fellowship in transplant nephrology). In my area lot of General Nephrologists claim to be Transplant nephrologist too… I went to one immediately after my transplant… it was a horror story.. ( Nephrologist was recommending enhanced version of medication ( i was taking the lowest version medication as I had no viral infections which I had been specifically been told to stop after 90 days by the Transplant center ). at that point I just walked out of the Doctor's office.
Finally in talking to my Son (Dr) / Cardiologist / pre transplant nephrologist .. I was able to find a Transplant nephrologist – to whom I am grateful for accepting me.
btw: I did go to a local Transplant center .. they were willing to accept me BUT wanted me to transfer the UNOS credit after 3 years… I JUST could not do that on moral grounds besides I owe my life to my transplant center for reviving me after 10 hrs ( had some issues) and a successful Kidney Transplant.
I sincerely wish well in your efforts & I am sure you will find a Kidney Transplant Nephrologist
First Year Labs every month
Second/Third Year: labs every 2 months
I also think the frequency of labs is dependent upon issues that you encounter. Suggest you use the portal and keep the Transplant Center in loop. ( I do that)
Best Wishes

REPLY
@l0lag0lag0b3

I can understand fully & sympathize with what you are going through, (My kidney transplant was out of state too)
I went through the same dilemma – with lot of turmoil in my head !
Try to find a Transplant nephrologist (some one who has done a fellowship in transplant nephrology). In my area lot of General Nephrologists claim to be Transplant nephrologist too… I went to one immediately after my transplant… it was a horror story.. ( Nephrologist was recommending enhanced version of medication ( i was taking the lowest version medication as I had no viral infections which I had been specifically been told to stop after 90 days by the Transplant center ). at that point I just walked out of the Doctor's office.
Finally in talking to my Son (Dr) / Cardiologist / pre transplant nephrologist .. I was able to find a Transplant nephrologist – to whom I am grateful for accepting me.
btw: I did go to a local Transplant center .. they were willing to accept me BUT wanted me to transfer the UNOS credit after 3 years… I JUST could not do that on moral grounds besides I owe my life to my transplant center for reviving me after 10 hrs ( had some issues) and a successful Kidney Transplant.
I sincerely wish well in your efforts & I am sure you will find a Kidney Transplant Nephrologist
First Year Labs every month
Second/Third Year: labs every 2 months
I also think the frequency of labs is dependent upon issues that you encounter. Suggest you use the portal and keep the Transplant Center in loop. ( I do that)
Best Wishes

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I'm glad you're able to relate my frustrations! Unfortunately in our area, the only way to find a transplant nephrologist is to transfer care to another transplant center. And I'm not sure we are ready to transfer care at this point. Does your transplant nephrologist have his private office, or is he an employee of an institution with a transplant center? I'm not able to find a transplant nephrologist with his own private practice in my state of California.
Can you please explain to me what "transfer the UNOS credit after 3 years" mean? Do you have to do that when you transfer kidney transplant care?
I think labs can be spaced out once the patient is stable but at 5 months post I'm not confident that drawing labs every 2-3 months is going to catch things early. Tac level can fluctuate at any time when there is a change in manufacturer which we really don't have control over. Tac too high can damage kidney, too low risks rejection, liver enzymes can fluctuate due to meds, etc. Labs need to be more frequent during the first year post transplant. When the patient is stable, I think I would be more confident to do labs once a month.

REPLY

Congratulations on the transplant. I also had a living donor kidney transplant at Mayo Phoenix in 2009 and, I think largely because I've been rigorous about medications and check=ups, have been able to resume a pre-transplant life. You are absolutely right to be disciplined about check-ups – we too are out-of-state – and have found that Mayo has good working relationships with local nephrologists. I return to Mayo once or twice a year but otherwise find that coordination of care works well.
Good luck…..
Mike Uremovich
Santa Fe, NM

REPLY
@caretakermom

I'm glad you're able to relate my frustrations! Unfortunately in our area, the only way to find a transplant nephrologist is to transfer care to another transplant center. And I'm not sure we are ready to transfer care at this point. Does your transplant nephrologist have his private office, or is he an employee of an institution with a transplant center? I'm not able to find a transplant nephrologist with his own private practice in my state of California.
Can you please explain to me what "transfer the UNOS credit after 3 years" mean? Do you have to do that when you transfer kidney transplant care?
I think labs can be spaced out once the patient is stable but at 5 months post I'm not confident that drawing labs every 2-3 months is going to catch things early. Tac level can fluctuate at any time when there is a change in manufacturer which we really don't have control over. Tac too high can damage kidney, too low risks rejection, liver enzymes can fluctuate due to meds, etc. Labs need to be more frequent during the first year post transplant. When the patient is stable, I think I would be more confident to do labs once a month.

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Good Questions on your part: I should have been a bit more articulate:

– UNOS credit: Every Transplant center declares successful outcomes at end of 3 years for public records, so for example if a transplant center does 100 transplants a year – say all the kidney transplant recipients survive 3 years then the outcomes are declared for that year as 100%, typically you can see this statistic on SRTR.org web site. just select a transplant center and see what the success rate for outcomes is. (Data from SRTR was used to prepare a short list of the transplant centers – my wife insisted as she was the donor – I had no say !! ). So for me to transfer the care to the local transplant center by signing a document (which would be sent to UNOS) that if I survived 3 years then -the local transplant center would get the credit for my transplant was not acceptable.( for reasons I listed out in the earlier msg)

Yes in my case the Tacrolimus levels did fluctuate with different manufacturer's, So I asked my doctor to put in the prescription for a particular manufacturer be only dispensed and that helped to a certain degree. The levels can still vary if you travel timezones and are not taking tacrolimus at given am/pm times + diet ( I think). I am not a doctor – but do believe if high doses of tacrolimus generate toxicity and hence initially after transplant my Transplant center prescribed Pantoprazole Sodium 40mg for 90 days ( It prevents generation of acid in the stomach) In my case the Tacrolimus dose had been reduced significantly to my surprise but gradually during the first 90 days

If you are in LA area I am sure you can find a Transplant Nephrologist. ( ask the transplant center they may be able to guide you)

My transplant nephrologist is affiliated with a transplant center and as well has well as has regular office. So for some months he asked me to come to the transplant center office and the I noticed that the transplant center medicare medical billing was much higher than what it is now (see him in his office and not the transplant center). + if you draw the blood at the transplant center the billing becomes much higher.

If the GFR of the kidney is reasonably good & stable that is a good sign, but that does not mean you cannot get other issues.. in my case my GFR is consistent & good but I have issue of PTE Secondary, Post Transplant Erythrocytosis.(blood becomes thick..the sooner you know the better it is .. in my case now I have to more vigilant about clot formations)
Best Wishes

REPLY
@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

Hi Rosemary how r u?
I still did not hear anything from athelea
I feel sad about that. I am well my latest blood came in and all numbers look great.hope your summer is full of fun..kisses jackie

REPLY

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
@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.

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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
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