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29837 tn?1414538248

Still in fine shape after the transplant.

It's been a little over three years since my transplant. I now go to a doctor In Phoenix, as I now live in Maricopa, AZ. Blood work always comes back perfect and they've lowered my Prograf (anti-rejection medicine) to 2 mg. daily. This was because I insisted in trying to go from 3 mg. to 2 mg. Reason? In the long run, this medicine can cause kidney failure because it is toxic. I know some of you may be heading for a transplant if Harvoni did not cure you, but I can tell you it's a life changing experience with a few bumps, but once you go over them, it's a nice smooth road and a big smile on your face...

Magnum
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683231 tn?1467326617
Hi Magnum so glad to hear you are doing so well! Yeah real quiet around here lately seems like everyone is cured and gone off into the sunset.

I was cured almost 2 years ago with Harvoni but had a bummer visit with my NP at the liver center. She said even though I am cured she still expects because of my age and that I have had cirrhosis for so long (9 years) plus had some symptoms of portal hypertension like esophageal varicies I had banded back in 2012 with no reoccurrence (thankfully) that eventually I will decompensate.

This is at odds with most of what I have read that once the cause is removed that the liver might begin to heal or at least not progress any further so I am thinking about transferring my care to UW in Seattle.

I sure wish Hector was still here to ask what he would have to say about this.

Anyway congrats and keep on keeping on
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29837 tn?1414538248
Thanks flyinlynn. Yes, it's a touch and go situation at times, but where there's hope, there's always a solution. We live in an age where discoveries are made nearly daily. This is the hope we cling to and pray that all will turn out well. Hang in there and best of luck...

Magnum
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683231 tn?1467326617
Thanks and same back to you ;-)
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Hi Magnum - I love hearing you're doing so well. I wish you continued health and happiness. You are a tremendous inspiration!

Flyinlynn - I don't know what your numbers look like but if the look alright I'd be pretty skeptical of your NP's prognosis. I respect medical personnel in general but there are some issues that should be left to a hepatologist and this is one of them. I learned many years ago never to solicit an opinion about a serious issue from anyone but a bona fide expert. All it does is create anxiety and stress and even if the opinion is positive you're never satisfied until you hear it from the person you really trust. Personally, I wouldn't buy into it at this stage for one basic reason - there is absolutely no upside in buying into it. People always say that we should prepare for the worst but my experience has been we are never prepared for the worst but if it comes we deal with it like we deal with everything. All we do trying to prepare for the worst is waste our time worrying and believe me, I have wasted way too much time worrying about things that never eventuated. I would get to someone I trusted and see if you don't get a more optimistic view of your situation.

Good luck and be happy.

Michael
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317787 tn?1473362051
Magnum, great to see you, Mike as well!

Lynn I agree with Mike. There is newer research and I think some people are still parroting what they learned in school.
You are doing well, keep the faith dear Lynn
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683231 tn?1467326617
Thanks Dee and Michael

Have an appointment in August with my hepatologist who moved from Swedish to UW. She when I last saw her before she moved to UW a couple of years ago very positive about my situation. She is involved with some of the experts at UW so I hope when I see her again she has a more positive take.

I guess my concern at the moment is my eGFR has been decreasing over the recent years and I just tested below 60 so that is a concern. But post treatment my platelet count rose from around 85 to 110 so that sounds like a good trend for that score.
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475555 tn?1469307939
Hi, Lynn. Please let us know what your hepMD says. We all worry about you.

Magnum: That's great! Your story is inspirational.
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29837 tn?1414538248
Doctor has lowered my anti-rejection Prograf yet again to 1.5 mg daily. He is very aggressive yet cautious in lowering this anti-rejection medicine. In the long run, Prograf can cause kidney failure because it is toxic. So when he lowers it, I have do blood work in one month to see if the volume of Prograf in my body isn't too low, otherwise, I would have to go back to the former dosage. Dec. 3rd will be four years post transplant and time for celebration. Doctor said one glass of champagne is not the end of the world, so there...
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