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Immune Suppression Meds

Transplants | Last Active: Jul 7, 2023 | Replies (44)

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@jennifer0726

@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!

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Replies to "@hello1234 Happy Sunday! That seems like a very harsh response from that nurse! Did they tell..."

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?