Immune Suppression Meds

Hi @hello1234. When your trough levels are reported, who gets that info? My local lab would take the blood but it was shipped to Mayo for processing and my team always made the decision on adjustment. They are and remain the ‘people behind the dials’ in anything transplant related.
Who has made changes in your tacro in the past?

Hi @loribmt 😊
It is so great to hear from you! I hope you are doing well. My monthly labs are requested by my local nephrologist.
But whenever there was a concern about my Tacrolimis level, I would contact Mayo for the adjustment.
I was under the impression that the transplant center was "in charge" of the immune suppression meds adjustments.
When I contacted my transplant coordinator yesterday she made it very clear, "don't call here, call your local nephrologist for any adjustment".
I just want to make sure that's the actual policy or are other transplant coordinators helping their patients with the adjustments of their immune suppression meds after two years post kidney transplant?

Good morning! ☺️ That comment sounded pretty terse from your transplant coordinator. There certainly could have been a nicer way to state that instead of making you feel that you’re ‘ cut off’ from their care.
I didn’t have a solid organ transplant so maybe it’s a little different with a stem cell transplant. I was told by my team several times that “We’re married for life, until death do you part…and let’s hope it’s a long and healthy marriage!” 😅
I’m no longer on tacro but routine blood results are still sent to Mayo 4 years later for my doctor’s review. He still calls the shots on my meds. (I’m not currently taking anything except a new statin ordered by my transplant doctor, but all meds get approval first through my team)

Hopefully other transplant patients like @rosemarya will have a solid answer for you. Do you make annual followup trips back to your transplant clinic?

@hello1234 My husband's nephrologist is the one who changes any meds around. It gets reported to the transplant center. The center he uses now is in Portland [Oregon], although he had his transplant at Scripps Green Institute near San Diego [CA] October 2016. When we moved up to Oregon, everything was transferred. He still has quarterly checks with his nephrologist, plus an annual evaluation in Portland. Also, he is participating in a clinical study that is researching a method of "early warning system" for rejection of solid organ transplants, with blood draws every few months.

He has has his tacrolimus dosage change a few times since the transplant.
Ginger

Hi @gingerw 😊
Thank you so much for jumping into this conversation!
It makes me feel so much better that your husband was also directed to his local nephrologist for Tacrolimis dosage adjustments.
I was really taken back when my transplant coordinator told me that they no longer help with the med adjustments.
But if that's normal protocol for everyone, then I will contact my local nephrologist on Monday to discuss.
My Tacrolimis target range is 6 to 8. My level came back 9.1 so I assume the adjustment will be 1mg less of Envarsus XR and then a retest next week.
Thank you again Ginger and @loribmt for helping me to understand this new process!

@hello1234 Glad to have helped ease your mind!

Not to downplay the manner in which you were treated, but I did want to say this: Everyone I am dealing with these days in the medical field seem to be under a lot of stress and time crunch. Please look askance on them, and try to "lighten" their day. A sincere "thank you", or hoping the balance of their day goes well may help them loosen their shoulders and feel a bit better. Acknowledge their workload, and let them know you appreciate whatever assistance they can offer you. I know, I know, there are times we don't feel like we should need to do this. but it will help us feel better, also!

I will be curious what your doctor says on Monday.
Ginger

@hello1234 not wanting to cause a volunteer mentors pile on, but I can’t resist adding my 2 cents worth. First not all transplant centers follow the same policies, procedures and protocols. I think each center establishes its own. I am post pancreas transplant (nearly 18 years). Now I am inactively listed for kidney transplant at Mayo Rochester, MN. Eighteen years ago I was thrilled with the pretransplant eval, education and transplant itself (at a different Tx Center) but the follow up was not satisfactory. Eleven years later I switched to Mayo Tx Ctr. when it came time to start the process again for kidney transplant. My local nephrologist works with both centers. I found out that he could rewrite my post transplant lab orders, monitor my levels and adjust my immune suppression medication (better than the previous Tx Ctr. This has been working out well since 2016. Not all nephrologists have experience with transplants &/or immune suppression. Could you discuss this topic with yours to find out if s/he would be comfortable taking it on?

Hello @cehunt57 😊
I LOVE a "Volunteer Mentor pile on"..... @loribmt @gingerw and @cehunt57 ....THE BEST! Thank you so much for joining in. I am definitely going to contact my local nephrologist on Monday morning to make him aware that my transplant coordinator referred me to him for all future immune suppression meds adjustments.
I will confirm that he's comfortable and ask him about a recommendation for my Tacrolimis dosage reduction.
(I think it will be a reduction of 1mg and then a retest in a week or so, but I will see what he says.)
Thank you again @loribmt @gingerw and @cehunt57 for jumping in to help me...I love you like family! ❤

Hah, be careful…I’m like that auntie in the family that people try not to invite to dinner! Bwahahahah.

You are the auntie in the family that everyone loves @loribmt ❤ I definitely know that's true with your Mayo Connect transplant family! I am so grateful for your excellent advice. (I rely on it on a regular basis)