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Care and community for post transplant patients when you return home?
If you are a kidney transplant recipient and have been released to a local nephrologist, have you experienced the lack of a transplant team and possibly a nephrologist that is not familiar with post transplant medical care? In my experience, my dialysis clinic staff was definitely a vital part of my care that stayed on top of every lab result, etc. Currently, my local nephrologist has no idea how to regulate my tacrolimus level.
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@princessdeewee
Hi and Welcome to Connect! Congratulations on your 5th year liver transplant anniversary. Please feel free to join in any of the conversations with comments or questions - anytime.
I look forward to hearing about your experience with your liver transplant.
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2 ReactionsThank you.
It seems something went wrong with this site. They refuse my user name and
password. Unfortunately I will not be able to join in. 🙁
@princessdeewee, You are signed into Connect. I know that because I am seeing/ and reading/ and responding to your reply 14 hrs ago. I also see that you have made 3 other responses.
Here is information about Connect that should be helpful to you for getting started.
- About Connect: Who, What & Why: About Connect
https://connect.mayoclinic.org/blog/about-connect/tab/aboutconnect/
What is a current question about liver transplant that you are interested in?
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4 Reactions@rosemarya
Thank you very much.
I changed my password and I am back in track. 🙂
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1 Reaction@revkathy49
Have you met the new nephrologist? Do you think they will be able to take care of your post transplant needs?
Have you considered asking about whether your local nephrologist would be able/willing to communicate with your Mayo transplant team about your continued local care? I don't know what is Mayo's policy on this, it is just a thought.
I am 68 years old and 18 months post liver transplant due to autoimmune hepatitis. The team I have has been wonderful. I have had no issues with my liver. Mycophenolate was discontinued after 1 year and I take only 6gr of Tacrolimus daily. I am currently with dealing with CMV and while it is the Infections Disease Center that is responsible for treating me, the hospital I have been with from the start has helped more than anyone. I go to the gym 3 times a week and overall feel good. I am always available for discussions.
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2 Reactions@terryvan
I want to extend a welcome to Connect. I feel energized just by reading your message here in the Transplant Support Group! It sounds like you are an active person with a positive attitude.
When were you diagnosed with CMV? How is the treatment going for you?
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1 ReactionHi Rosemary,
Thank you for inquiring, I was never "down" during the time of diagnosis to transplant (3 years). There were difficult times, but overall, it was never scary or really even painful CMV started in February, earlier this year. Seemed like the flu, but my GP said it wasn't. I was tested for CMV about a month later and tests were positive. Number wasn't high (5000) and I was prescribed Valganciclovir for 90 days, My numbers dropped in half ever other week until it was down to 650. In mid June, number went to 125,000 and then 675,000. I had become resistant to Valganciclovir, and was prescribed Levticity (maribavir). The fatigue was pretty bad - I ended up on the couch all day for a month. I continued eating, but food just sounded awful to me. The immobility caused intestinal issues and I was hospitalized for 5 days since I wasn't passing anything. It also caused low RBC, Hemoglobin, Hematocrit, Sodium and Carbon Dioxide. I had become resistant to the Levticity so I am now on Prevymis (letermovir). I am waiting as I type to see the results of the labs and I am hoping my CMV is gone or nearly gone. I feel good, I am back to the gym 3 times weekly and I have a good appetite. I did develop CMV retinitis which has caused some serious floaters in my eyes. I am seeing A retina specialist and was prescribed Prednisone (oh whoopee) for a month. Hopefully this will solve the issue. I am going to see my Hepatologist tomorrow - 18 month evaluation. My liver numbers have been strong through all of this but because they took me off of Mycophenolate (conflict with CMV meds) they wanted to see me again. I go to Baylor, Scott & White All Saints Hospital in Ft. Worth. I cannot say enough good things about the treatment I have received there. Texas Center for Infection disease has been handling the CMV - I've been less than happy with the overall treatment, but I will stay positive. I hope this wasn't too long winded. Please reach out to me with any further questions.
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6 ReactionsHi Terry. I had a liver transplant about 2 years ago. No CMV till the end of the first year then had it with lower loads than you. On and off on Valcyte 4 separate times but it is not showing up anymore. No epiphanies or even suggestions but just read this thread and wishing you the very best of luck. Glad you are feeling good !
Stay strong (--:
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3 ReactionsThank you, Craig. Just got home from seeing my hepatologist. Lowered my tacrolimus to 4/day to help fight the CMV. I just received my numbers an hour ago - down to 7000. Not as low as I had hoped but still dropping so I will be patient. Other than the eye floaters, I am healthy and feeling well. Thank you for the encouraging words and best wishes to you on your continued recovery.
Terry
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