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Thank you so much for your enlightening advice. Straight from the horse's mouth. I hope you don't mind a few questions.
1. Are you still on immunosuppressants, specifically tacrolimus? If so, for how long continuously?
2. In these 30 years have you ever had an episode of 'rejection' (even a mild one)?
3. How frequent do you do your labs now?
I imagine that your initial transplant team members have either long retired or are on the verge of retirement. You must have gone through several transplant follow up doctors/coordinators.
I will celebrate my first year after liver transplant in this month.
Thanks again & congratulations for three decades of post transplant. You are truly an inspiration to all of us.
Replies to "Thank you so much for your enlightening advice. Straight from the horse's mouth. I hope you..."
@rgb3547
I apologize that my first attempt to answer you didn’t go through.
In answer to your questions:
1. I am still on 1 mg tacrolimus per day.. I’ve asked the doctor to take me off totally, however he wants to do a liver biopsy every six months if I go off of it totally. I won’t do that because I’m on blood thinners. So, I guess I’ll be on them for life..
2. I had a slight episode of rejection after six years. I was on a drug named Cyclosporine. The doctors said that was probably the cause so they put me on tacrolimus and I’ve been good ever since🙏🏻
3. I was doing labs once a year until the old transplant team took over. They changed my labs to every 6 months and I’m still doing labs every six months at my internist office.
I have only gone through two teams of transplant doctors but numerous coordinators. ( I totally understand! Being a coordinator is a hard job with long hours and they’re overworked horribly)
Congratulations on your first year🎉 That’s a big accomplishment! It’s hard work staying well and keeping up with all of the meds etc. Do you feel more like your old self before you got sick? I did, it was a major milestone for me:) I try not to take life for granted. It’s still one day at a time for me and I thank God for every day that I’m alive and well🙏🏻🙏🏻🙏🏻
Take care of yourself and try to walk daily, it really helps to keep moving. Stay in touch…. Elaine
Punkin27 yes I agree with your post. Most of all congratulations on 30 years u made my day. I am2.5 LTP w/one episode of rejection. Taking a lot more immunosuppressive meds YUK and off prednisone. Yay.
I wish u nothing but continued health.😊💚
I will be looking out for your post that rgb3546 sent u.
I am very interested how things will be after 30 years..
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I replied to your questions but think I did it wrong ? See if you can find
your reply to me, I answered all your questions in bold where each question
was asked… please let me know and I’ll be glad to find it and answer your
questions the correct way!
@elainesummers