Immune Suppression Meds

@gingerw My local nephrologist has made the comment in the past, "have Mayo adjust the immune suppression meds. It's to your advantage to have their expertise".
That's why my transplant coordinator saying "don't call here" makes me so upset.

I don’t even have a local Neph!

I had my transplant 5 years ago. When I asked my nephrologist at my last visit with her before transplant, “Will I be coming back here?”, she said “I think Mayo will be keeping a close watch on you.” I have not been back to see her since. I have my labs done locally every 3 months and the results are sent to Mayo. Mayo was the one that made adjustments to my meds when I had Covid. My local pcp also gets the lab results.

Hi @jennifer0726
Do you use Mayo Rochester for all your labs and doctors? Do you have a transplant coordinator?

Hi @cmael 😊
It's so great to hear from you! Was there ever a time that your local nephrologist adjusted your immune suppression meds or did the adjustments always come from the transplant center? I assume during BK, that the transplant center handled that adjustment, and during covid, but were there any other adjustments that your local nephrologist ordered?

Hi @hello1234
Mayo orders and receives all of my 3 month labs. They handle everything transplant related, including consulting with my Mayo thoracic surgeon/team when I had surgery 5/1/23 to remove a gastric Leiomyoma and partial fundoplication and being re-admitted same night as discharge for surgery related complications for an additional 9 days. So thankful I had surgery at Mayo! I have a local PCP Nurse Practitioner (internal med) and she has access to my Mayo info as I linked it to Mercy MyChart.

Hi @jennifer0726 😍
Wow, that's the extraordinary care, support and patient centric experience I associate with Mayo Clinic!
I am so thankful that during all of these issues and challenges, my good friend Jennifer was being taken care of by Mayo! Maybe I should look into moving west towards Iowa and Minnesota. It would be great to be located near Mayo and we could grab lunch after our doc appointments!
Thank you for telling me about your Mayo Rochester experience and I am thankful that this experience is behind you. (Nine days in the hospital sounds pretty intense and upsetting Jen). How are you feeling now?

Hi @hello1234
It was actually 3 days post surgery +9 days 5/1-5-12. My point was that it’s a beautiful thing when you can actually have your Transplant team available to consult if you need other serious care. I really don’t understand why Mayo Florida and Arizona can’t do the same thing. I am frustrated for you. I suppose if you’re too far away, I am about three hours away in good weather.
It would be awesome to have you here and we could go out to eat or something after appointments! I would love that!
I am doing much better, thank you. I will be back there for a minor procedure in a couple weeks. Hoping for an uncomplicated future medically for all of us! ❤️

I have not seen my nephrologist nor have I had any contact with her office since my transplant. Mayo has handled any adjustments to my meds. My practitioner at Mayo adjusted my meds for BK and for Covid. She also prescribed the infusion for my Covid treatment. Then my PCP put in the orders locally for the infusions. It worked the same way when I got the monoclonal antibodies before I got Covid.

@jennifer0726 and @cmael
Thank you both for always being such supportive and caring friends.... I wish we were neighbors!
I have to say that I am jealous that Mayo Rochester appears to be offering more support post transplant.