I emailed aforementioned expert in hep c late last night, thinking there was probably no way he would respond but that maybe, just maybe, he would…and he did!

I have to say I am giving myself a pat on the back…and a BIG thank you to all my pals at hcvsupport.org who were telling me the same things…between all of us we came up with the exact treatment plan that he is now recommending. I was correct in thinking I need a transfusion and procrit even though both the ER doc and my doc said no to it. Here is what my new doctor says:

“Yes I would agree that you should be started on procrit at 40000 IU per week and you should have a 2-3 unit blood transfusion today if at all possible  I am currently in Santiago Chile.  I will cc this to my nurse and ask her to arrange this for today.  Hopefully this will work as a stop gap measure for today. ”

Could have already had that 2-3 unit transfusion yesterday, but oh well….

You have to stand up for yourself. This was a very hard thing for me, because I like my treating doctor and we have developed a good rapport. It was upsetting to me to have to get to the point where I was being rude to him in order to get him to take me seriously about not stopping the riba.

Then the ER doctor acts like I’m being a drama queen, even though I KNOW I am more familiar with the effects of the ribavirin than he is. I told him, this drug has a 6 month half life, so even if I quit it today it will still continue to destroy my red blood cells. Also, if I quit it today according to telaprevir treatment protocols, I have to stop my entire treatment.  I said I know this is not your problem, but I am NOT quitting the ribavirin.

Oh and by the way, telaprevir was not even in the hospital’s computerized list of drugs, so that didn’t really give me much confidence that this doctor knew better than me…..

This scares me people. I should not have been allowed to get to this point. I had to say that to the doctor to get him to stop his spiel on “I’m the doctor and you can’t just read stuff off the internet and think that you have to follow it to the T, and you WILL stop the riba if no one will write the prescription for you.”

I said, I know that. What I am saying to you is that I don’t think it is fair that I was allowed to get this low and now my treatment is being jeopardized because of it. I wish we had started procrit two weeks ago back when my hgb was 9.9, and then maybe you would not be telling me to stop the riba now.

I am not looking forward to these transfusions. I am VERY squeamish of IVs, and I hate the thought of someone else’s blood being in me. This is how I got hep c to begin with.  I figure my odds of getting hit by lightning twice are pretty low though…..

Advertisements