Turned down for new treatment

Hi all,
I just got back from my appt. I've been waiting for months for today. I was suppose to get the final approval to start the new Hep C treatment. My blood work showed my liver enzymes were too low and my bilirubin to high. Seems like the only thing left is a transplant. My meld is 14, not high enough for a new liver, but sounds like they are going to put me on the long list. I really thought I would be cured after suffering through the treatment. This is a real set back, anyone have any advice? And no I don't know what the count was. I was so shocked I forgot to ask.

Hi notso1951-
I did view your post and I didn't reply. I am sorry for that. I viewed it yesterday soon after you posted. I have no experience with hep C, so I was standing back thinking someone with more knowledge than me would reply. I am sorry that no one else replied to you either. And you are new to this forum. It is really out of character that no one had anything to say. Even me. Again, please accept my apologies.

Will you get copies of your lab reports? Why does the low enzymes and high bilirubin disqualify you from the treatment?

Sorry again, feeling a bit shamefaced. Give us another chance.

Emma

Hi 1951.

Don't be discouraged about the low Meld Score. It means that you are doing what you need to do to stay strong while waiting for transplant.

Those here who have or are waiting for transplant pretty much follow a pattern...low teen meld, some crazy medical crisis and they zoom to the top.

Some percent of them, like Ron or Connie or my Mike, develop a HCC tumor and get moved right to the top. Or like David, who had a brain bleed and then a tumor and went right to the top of the list. Al worked full time through the spring and then fell very ill with kidney failure and was on dialysis 24 hours a day, had a bunch of crises and got his liver recently.

The trick is to stay as healthy as possible, keep on a great diet, low salt, exercise when you can, rest when you need to, and take the meds the prescribe for the various side effects that can make liver disease disabling...ascites, hepatic enecpalopathy, diabetes, hepatic hypertension, it goes on. Before Mikes transplant, I think he was taking 14 meds to keep stable until his turn at bat.

He had the added burden of being very ill and had not stopped drinking alcohol (self medication is not good for ESLD) and Hep C. He had to LIVE and take his meds and hope to last through the 6 months of sobriety before he got his turn.

thankfully it worked out. He is 6 months post transplant now and with a couple of hiccups he is doing well.

Best to you. I wish the new treatment had been available to you. Maybe after tx.

Carol

Each new person is generally welcomed by our moderator, hep93, Connie. She has gone quiet. We think she got her own call. Join us in praying for her speedy recovery.

Carol

Post Edited (MamaLama) : 10/28/2011 8:11:01 PM (GMT-6)