Liver transplant - Let's support each other

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.

@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

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.

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.

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

@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 @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

Hello Group. Did anyone have infection complications after a liver transplant, e.g., staph bacteria or cytomegalovirus? If so, would you be willing to share (either publicly on the forum or message me) your experience and the time line for recovery from such infection(s) once treatment was initiated? Thank you!

Xplantsister- I contracted CMV (cytomegalovirus) 2 months after my liver transplant in 2016. I told people at that time that the disease was like having mono on steroids. My treatment consisted of having a PICC line inserted for in home infusions of 450 mg of Ganciclovir In a 100ml bag. Each session lasted an hour and had to take place every 12 hours. Was also put on Prednisone and Prograf at the same time. Hope this information was somewhat helpful.

Hi. Thank you for sharing. How long did it take you to start feeling better after the CMV treatment started? I take it the virus did not come back later in your recovery? Do you have any advice for a caretaker in such a situation - can we do anything to lift spirits or help the sufferer feel better?