Immune Suppression Meds

@loribmt
I forgot to answer your question. Yes, I will have an annual visit with Mayo. My coordinator told me that I get an annual visit. During the year, use my local nephrologist.

@hello1234
Happy Sunday! That seems like a very harsh response from that nurse! Did they tell you at any time that they would no longer follow up on your labs and make med adjustments? If they had not, I would have said so and asked if they are no longer following up yearly. You have struggled so much wit BK virus, etc. you need to know this. At Mayo Rochester where I received my transplant, they continue to follow me for post transplant care. I am very thankful for them. I have heard on here Mayo AZ also stops following at 3 years. Have you had your three year appointments? Are they scheduled yet? Maybe ask at the appointments if they are. If not then try sending the Transplant Surgeon a message and hopefully another nurse will respond. You are such a kind person and do not deserve to be talked to like that even if they are busy. I hope your local nephrologist can cover this for you if you can’t get a response. Take care!

@hello1234 I just saw your response after I sent mine about your annual. Hopefully you can clarify more then!

Hi @jennifer0726 ❤
It's so great to hear from you! As usual, I agree with everything you said.
Thankfully, it sounds like I will continue to have my annual visits, (at least for now).
I will keep you posted on what my local nephrologist has to say about my "out of range" TAC. Do you take the long-acting Envarsus XR too? Do you think our diet effects the levels or something else?

Hi @hello1234
Happy to chat with you, too!
I take regular Tacrolimus. I am not sure if diet has an effect on levels or not. I think the last time we chatted I may have thought your dose might need to be lowered based on what you told me. Since we take it on an empty stomach for the trough level I wouldn’t think so. I have wondered if it was the manufacturer of the med as when the manufacturer changed my levels have been higher or lower. They pooh-poohed that idea, but on some other report or resource, I had read it can make a difference. They have allowed my target range to be lower 5-8 as I have symptoms even on the higher end of that. If I were you I would be happy to have it lowered as then your immune system would be better able to fight off things like BK. Hope you are staying cool! ❤️

Thank you so much @jennifer0726 for all your excellent thoughts! 😊
As far as "staying cool" in late June in South Florida..
how does 90 degrees, sunny and humid sound? LOL Luckily, it's been reliably raining on cue every day at 4pm so that tends to leave the air cooler for an evening walk. The summers are a little on the hot side, but I love the Florida winter weather!

@hello1234 We have had temps in the 90’s lately in Iowa, too! Thunderstorms last night finally broke it and will be better for a few days. We get all extremes!

@hello1234 That is a fairly common "standard operating procedure" for solid organ transplant people. Unless you were lucky enough to live close to a Mayo campus where your procedure was done!
Ginger

@gingerw and @jennifer0726
Has your local nephrologist ever needed to call your transplant for advice?

He has enough of an attitude he would never admit that to us!
Ginger