Hi Rosemary,
Congrats on keeping your liver and kidney transplant for over 10 years!!! My issue is the transplant care after we got home from Mayo Az. At the time of dismissal we were told by Mayo that we needed to find a doctor within 30 days who is willing to follow hubby. So a local neph/PCP would follow hubby unless something happens like CMV, BKV, etc. Well hubby got CMV 2 months after he got home and Mayo stepped in to manage and the CMV looks like it's resolving. With Mayo managing we have a standing lab order and we do labs weekly. However, prior to CMV when local neph was managing, he was ordering labs once a month. The local neph is one of hubby's nephs pre transplant so we know him as a dialysis neph. He currently manages hubby like he would a post transplant patient who has been stable beyond the first year. He orders labs monthly and consults with hubby monthly to go over labs. Once a month may be sufficient for a dialysis patient but I don't think it's enough to monitor the various labs such as Tacrolimus, WBC, CMV, etc, in the early stages of post transplant. Because levels fluctuate quite a bit in the beginning, frequent labs are necessary to adjust medications. Once meds are adjusted labs need to be drawn again to check for appropriate levels and it's not something that can wait till next month. The local neph is a good guy and very knowledgable about blood pressure and kidney diseases but he just doesn't spend time frequently enough to monitor someone who is fairly new post transplant. I think the neph is just overwhelmed with work from different venues that he just doesn't have a lot of time to devote to each patient. He runs a private practice part-time, he is a medical director at one of the DaVitas, and makes rounds at 2 of the local hospitals, plus he has a different side venture he's involved in. It's extremely difficult to get a hold of him and I'm just very concerned that if my hubby needs something right away, that he's not going to be there to support us. His office staff is the worse, they don't return calls and they take the phones off the hook during lunch hours so you cannot even leave a message. When you do get someone on the phone, the respond is inevitably "you have to talk to the doctor". Well we're calling because we want to leave a msg with doctor but the inquiry is never responded and we have to call back. Overall the office staff is just terrible. Where we live it's very difficult to find a good nephrologist who will accept new patients. What is more concerning is that when we consulted with the local neph(a few days ago), he suggested to do labs once every 2 months. At first he wanted to do once every 3 months but when he found out Mayo is still following hubby he changed to 2 months!! Keep in mind that my hubby is only about 5 months post. I'm just very confused as to what is the appropriate lab schedule for a post txplant patient under 1 year. I'm sorry for ranting but just want to know other's experience is.

Hi Rosemary how r u?
I still did not hear anything from athelea
I feel sad about that. I am well my latest blood came in and all numbers look great.hope your summer is full of fun..kisses jackie

It’s been 4 years since my transplant. I also don’t have a local nephrologist, but if needed I suppose I could go back to the last one that I saw before my transplant. She had told me at the last appointment before my transplant that Mayo would be keeping a close eye on me when I asked if I’d be seeing her again. I have a local PCP. There’s an open network between both providers. My labs are done at a local medical center every 3 months. They were done monthly for the first year, then changed to every 3 months. Then the BK virus showed up. My Cellcept was lowered to 500 mgs twice daily from 700 twice daily. Back to monthly labs. The virus slowly lowered in my labs and after many months disappeared.
I had a biopsy done shortly after my transplant because I was showing signs of rejection. Steroid infusions corrected that problem. Then I had another biopsy at 4 months and 1 year. The second year I didn’t have one because I’d forgotten to stop my daily aspirin soon enough. I haven’t had a biopsy since. I was scheduled for one at my 4 year checkup but she gave me a choice. She said that I was doing so well, she was fine with me skipping it since there are risks with it, too. All of my blood work, except glucose, comes back in the normal range.