emwell2....well done. I agree with themiz...keep duplicate records of everything. And here is an example of why....at one point Mike was almost 3 years post Transplant and the NEW meds were not yet available AT ALL and his nice new liver was getting messed up again. He got a call from his TP center that they were to be host to some Phase II clinical trials and needed some candidates to get the Sovaldi and Ribavirin. Well, he was all over that, of course..free meds with great trial results so far. There seemed NO reason not to do it.
But, they said, there was a very narrow window on getting a slot in the trial and facilities were notoriously slow in getting paperwork when the center sent release forms for scans, biopsies, bloods, etc etc and there was a list of about
50 documents they needed for the trial.
Well, someone on this site gave us this good advice YEARS ago and we had EVERY document and MRI disc, got in the car and drove to Miami with a BOX of stuff.
Unfortunately he did not get chosen...because his fibroscan was F3, not cirrhosis and so he was not sick ENOUGH after TP to qualify for the arm of the trial that had
openings. We were sorry he missed that chance, but in 3 months the Sovaldi became available anyhow and he got the treatment March, April, and May of this year.
So, lesson learned...save your stuff, make a file system or notebook. Itcould save your life.
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.
Post Edited (MamaLama) : 11/2/2014 2:53:03 PM (GMT-7)