Post-Transplant Blog, Pt. 9

Hey Connie, I had a similar problem when I had sun poisoning on my back and had to put cream on it. I took a back-scratcher, wrapped tissue or gauze (or some paper towel, can't remember which) around one end and put a rubber band around it. Then I put the cream on it and used that to get to the area I needed. It actually worked pretty good!

The thoracic surgeon I saw today did not want to risk doing the talc injection to seal off the pleural space. He said it would be a surgery, requiring an incision and scraping of the lung in several spots...too much risk of bleeding and infection in liver/TP patients, and also painful. Instead, he wants a draining to be done next Thurs. AM and a chest tube placed. I would then drain it myself every other day until the fluid decreases and the times I would need to drain would grow less frequent, until there is no fluid at all. This can take weeks to months (and knowing myself, it will be months.) Of course, a permanent tube in my side for that length of time poses its own risk of infection.

The hepatologist I saw later prescribed Atarax for my itching...hurray! We also discussed at length the Extrended Access program of Sofosbuvir w/Ribavirin and with interferon. While called Extended Access, the doc said it is a trial and didn't recommend it for me.

He was enthusiastic about the Sofosbuvir/Ledipasvir trial with Riba. While he prefer I have no Riba and definitely doesn't want me on interferon, he feels that this would be the only treatment truly suitable for me and putting me at the least risk. He said at the moment they are not a facility using this, but expects that status to change within days and for it to be in place by Dec. at the latest. He is going to submit my name, though no guarantee I'll be chosen. Hopefully, by then, my fluid/breathing problems will be resolved or at least under control. I suggested he note that this is the sole treatment currently doable for me. Being a Grade 3, Stage 3 fibrosis, I can only pray that I'm admitted into the study.

So I'm done with Mayo until next Thurs., when I will definitely be due for draining. I'm already short of breath.

Hugs,
Connie

Well, I wouldn't jump the gun, Barry. He's submitting my name...has already discussed my case and this option with my TP surgeon and other hep docs familiar with me...but there's no guarantee I'll be chosen. Carol said that Mike was notified that they have closed this study at Jackson. I wonder if that's just the first arm of the study and Mike was not selected for that...not that they have closed it altogether there?

I had read somewhere online yesterday that new subjects were not being recruited due to the partial govt. shutdown, but the hep doc said that's not true...it's not an NIH study, but sponsored by Gilead and is going forward. This hep doc is extremely bright and seems up on all the latest.

Hugs,
Connie

Mayo Jax is not officially a facility that is involved in this study. They are doing the necessary work to change that and expect to be formally accepted as a center that will be involved in this study...within a matter of days. Therefore, they are gathering names of possible candidates and submitting them. I suppose it is up to Gilead to choose which patients will be selected, since there are only so many open spots and they cannot accept everyone whose name is submitted. Which is why I suggested he note that this is the ONLY treatment suitable for me. They expect those selected for the study to start treatment by Dec. at the latest, but they think it will be much sooner. My breathing problem would need to be under control by then.

I had read somewhere that Miami was no longer recruiting...that it was closed due to the partial govt. shutdown. But my doctor told me that wasn't true, since the study is sponsored by Gilead and has nothing to do with the govt. However, Carol's Mike got a letter that the study had been closed at Jackson Miami. I'm wondering if he just wasn't selected for that first run of the study, which goes into Nov. Then another round is supposed to begin. The study in general will run to Feb. '15, but I don't know if that's at every center that is doing it.

Lots of questions, as with anything new. But you are right, at least they are now pursuing treatment for me. For so long, with my infections, surgeries, and various complications, they would not even discuss it. Thank you so much for letting me know about this study. This hepatologist seemed very knowledgeable about it, and concurred with you that this would be the best treatment for me.

Hugs,
Connie