Liver transplant - Let's support each other

Hi @michaelswaim I too welcome you to Connect. Congratulations on your transplant. I am 3.5 years post-transplant (liver). I also never had noticeable problems with my medications. Initially, they were adjusted a number of times but they have been stable for a very long time now. The only problem I did have was that tacrolimus caused my creatinine number to be high so after trying to bring it down by drinking 80-100 ounces of water a day, which helped but not enough, they switched me to sirolimus.
It sounds as if you are doing great, I hope you continue to feel well. These times are trying for everyone, but most particularly with us on immunosuppressants. We are being as careful as humanly possible I think.
JK

@michaelswaim,, Hi, Michael and welcome to Mayo Connect. As fellow transplant recipient, I am thrilled to meet you. Congratulations on your transplant. I read on your profile that you are a liver and kidney recipient; so am I. I transplanted at Mayo Rochester in 2009, and my donor was an anonymous deceased donor. I had PSC (Primary Sclerosing Cholangitis).

Michael, Would you tell us about your experience? How is your first year going?
- Please remember that this is a public forum, so it is okay to share only what you are comfortable to share.

Hi everyone. I'm new, not even a year post transplant

It was not with tacrolimus but with specialty injections to boost my white blood cell count. It was so frustrating they will be my last option.

A local CVS in Beaufort NC They called other CVS stores and said they could not get any. I found a supply at an independent pharmacy but Medicare would not pay for it and would be out of my pocket even though my doctor called it in.

@jerrynord Hi I also use mail-order cvs caremark and have had no issues getting my Tacrolimus so I'm a bit surprised you are having issues. Are you getting it from a local CVS store or by mail-order?
Have a blessed day
Dana

I was finally notified by CVS yesterday that they are unable to obtain my Tacrolimus and have contacted by doctor at Mayo for a substitute.
This week my Mayo coordinator said he put an order into Caremart and I should get it by thursday. I have enough until then. CVS asked me to look around also.
Keeping fingers crossed for next week delivery.

@benlam That's terrible that you have had problems with the CVS Specialty pharmacy. I have nothing but praise for the one in Boston. They call me in advance of shipping my prescription and most of the time I have them ship it to my local CVS so I don't have to be home to sign for it. Now, since I am home all of the time anyway, they are shipping it to my home. They know I want the same generic all of the time and have always abided by that. One time they did ship a different generic and when I called they rushed the correct one up here.
I have never used any other than the one in Boston, they have not passed me to other CVS pharmacies.
JK

Also try Osteen's here in Jacksonville. They are a local pharmacy and they also do home delivery. They are who does all the initial deliveries of medications to Mayo for transplant patients. They are sure to have it.

I have received Tacrolimus from my local CVS before (even though I now order from the Mayo Pharmacy in Rochester) the CVS must call Medicare to get approved to dispense the medication under Medicare Part B - it took mine one day. The CVS specialty pharmacy, for me, has been a disaster and I would NEVER use them again. They have several locations across the U.S. and I was passed from one to another every few days without satisfactory results.