Care and community for post transplant patients when you return home?

Hello and welcome! 27 yrs liver transplant here - I never relegated the tacrolimus monitoring to any doctor other than my transplant team. I found Mayo to be very agreeable to providing lab orders to be taken outside of Mayo (we have Sonora Quest and LabCorp), then the results go back to the ordering MD and I continue to have bloodwork including tac monitored by Mayo. You are right, monitoring tac is a super super specialty that doctors don't learn in med school and don't really have much opportunity to deal with. It is such a critical medication, your life literally depends on its regulation of your immune system. Good for you for asking the question!

Hi. I agree with cromme50. A liver transplant patient from 2 years ago. I have been very fortunate to have a local team/insurance/lab that is 100% up to date with TAC, blood work, etc.. And it has saved me more than once. Caught CMV virus proliferation and they stoped it with Valcyte etc. I am down to 10 meds (from 24 post transplant). But am told I will be on TAC for life. Local docs take my blood work monthly and send to Mayo who adjusts my TAC thusly. But local folks up to speed and or working with Mayo is a must. Different doctors have different specialties wheelhouses etc. No disrespect to yours but if they are not, do not , get up to speed on your needs it may be best for all to find help elsewhere if that is an option. Just a thought. Best of luck.

I am a year post kidney transplant and now transitioning back to local team, but am fortunate they very much work together and all same clinic, so MyChart is shared and a wonderful tool. My nephrologists actually talk to each other! (Am not with Mayo as no location close to me)

I suggest you ask your transplant team for a referral to a nephrologist they can work with. . Tacro monitoring is extremely important. Good Luck 🙏

@revkathy49, Hi and Welcome to Connect. I am a liver and kidney transplant recipient. I received both organs almost 17 years ago from an anonymous deceased donor in a simultaneous liver/kidney transplant surgery at Mayo Rochester. During all of those yeaes, I have maintained my follow-up care with the Mayo transpant team with annual visit and 3 month labs with a mail-in prograf kit. My local PCP is more than happy to authorize the lab orders because I don't live in MN. And he is really happy thay Mayo leads my aftercare. I guess I incorrectly assumed that everyone had a similar set-up for post transplant care.

RevKathy, How long ago was your kidney transplant? Have you considered looking for a different nephrologist? -one who is connected to a transplant center or is familiar with the needs of a kidney transplant recipient?

@rosemarya Thanks for your kind note. My transplant was almost exactly six years ago at Mayo Clinic Jacksonville. I have an appointment with a new nephrologist who is known for his care for post transplant patients. I am hopeful because he will be the fourth nephrologist I have had in this area (Macon,Georgia). Not one of the four have had experience in post transplant care. I am in the midst of my second rejection scare, and my current nephrologist did nothing, not even explain my labs to me. Honestly, I know more than she does, and that is frightening.

I have made annual visits to Mayo and have bern in contact with them regarding labs that show the possibility of rejection. We have kept my Prograf level steady, and my levels were difficult to regulate. For at least three years, I have fluctuated greatly on my Tacrolimus.

Thank younfor your kind welcome and your suggestions for getting this latest crisis under control.

@revkathy49 Good morning Kathy. I received a liver transplant at Mayo JAX about 3.5 years ago. We live near the Mayo now, but spend about 3 months in New England - where our kids are. I always ask Mayo to provide me with the blood orders when we are in Boston, and when the results come in, I copy them and upload them to my nurse coordinator with a note to please advise as to whether the transplant team has any concerns. Fortunately no rejection scares, but they have made a few adjustments to my TAC dosages over the years. I agree that your transplant team are the ones who should be interpreting your test results. It takes a bit of work to make sure they get them if the bloodwork is taken outside the Mayo system. Wishing you well.

@revkathy49 Welcome to Mayo Clinic Connect!

My husband had a kidney transplant from a deceased donor October 1, 2016. He was followed by his transplant center at Scripps Institute La Jolla [California] plus his primary care at Kaiser Permamente. In June 2020 he moved to southern Oregon. The first year he traveled down to La Jolla for his annual evaluation [1000 miles each way] , then switched to Legacy Good Samaritan in Portland [4.5 hrs away] from 2021 to the present. His local [50 miles each way] nephrologist sees him every 3 months, and monitors his TAC among other things. Only his transplant center in Portland checks his microphenalate levels, for some reason. A couple of times his local nephrologist has called to change up a medication, but usually it is his transplant team at Legacy Good Samaritan who does the more in-depth evaluation. His appointment this year is in 2 weeks.
Ginger

Hello everyone.
I am a post liver transplant patient.
This last September I celebrated 5 years of a second chance to life.
I am grateful to be here so I can read your daily experiences and learn from them. Later on as I get acquainted, I would like to participate by inquiring a few things. Until then I will be here just reading and learning.
Thank you all.

@princessdeewee
Hug 🤗 back.

Like Rosemary, I had a liver/kidney transplant at Mayo in Rochester. Post transplant I stopped seeing my local nephrologist and left my care to Mayo Clinic.
I was seeing him once a year and since I now have an annual checkup in Rochester I saw no reason to continue with the local visits.
I have my bloodwork done locally (currently once a month) and the results sent to Mayo.