Down

[gauf]

Feeling kind of down. I am a 2x relapser with cirrhosis. Now, I find out I have steatosis. Losing weight is damn hard. When I think of what is coming (again), and the fact that I can't get a hold of alinia, or get my doc to ok double dosing, I wonder if it's worth it. I mean i don't feel my odds are very good for SVR. I have lately been thinking that maybe it's just the way it is, why NOT me?  Thinking about dying and trying to come to terms with it. Not angry anymore....just starting to accept that maybe I am just supposed to go. Thinking about how long I can last. Spirituality too.  I know some of you must have felt this way... I am not a quiter, but, well some of us just can't win no matter what it seems. Not even looking for advice really, I just can't say what i am feeling to my family as they will not understand.

[FlGuy]

Descartes:
I doubt, therefore I think, therefore I am
Foresee in the role of Descartes:
I doubt, therefore I think, therefore I am and am the only one who thinks

[katerika]

Came across this quote I'd like to share


Hope has two beautiful daughters - their names are anger and courage; anger at the way things are, and courage to see that they do not remain the way they are.

St. Augustine


Keep up the fight!
Teri

[Forseegood]

Beautiful quote. Maybe we cheered up Gauf...hope so anyway...

Flguy: why I oughta...

[charm27]

Awesome quote. Never heard of than one before.
Thanks for sharing  it.

[gauf]

First, thanks all for comments, it really helps. mrmeet, I agree that I need to get aggressive, which is why I went to a good hepatologist. However, he nixed some of the things I want to do, which is why I am in the dumper so to speak. I am dependant on forces beyond my control. I could change docs again I suppose, but took a lot to get this guy to see me. Anyway, my TX history is on my profile. P.S. Augustine rules.  -Geof

[mremeet]

Dude, this is purely my opinion, but I would have a go at it again and real soon. You're still compensated, the window before transplant or death is still very much open. You have to take advantage of that window and do it real soon. If your doctor won't go along with Alinia, and you want to try it (which I would without a moment's hesitation), then go with another doctor. I know of people with cirrhosis right now that are in a similar situation as you, and they've added Alinia to their SOC regimen in hopes it will help them out of their desperate situation (without actually having hard evidence in hand that it will). And remember that Alinia has a very low side effect and toxicity profile, and it's already available RIGHT NOW. All you need is a doctor who knows about it (or is receptive to learning about it) and is willing to prescribe it to you (in addition to SOC). Go with a doctor who's creative and adaptive and will listen to you. A doctor that will let you take higher than normal dosage if you choose to, who will liberally apply procrit, neupogen or whatever you need to keep your doses up. I don't know who your doctor is, but putting a high BMI guy like you on only 800mg of riba in this day and age of weight based riba is a sign he doesn't know what he's doing (unless you have a special problem with anemia/platelets etc that would dictate that). You're in between a rock and a hard place having cirrhosis, but your problem is probably solvable with the drugs that are available right now. Solvable if you get an aggressive doc that will take chances, be creative and be willing to push the envelope. And lucky for you, you have geno 3 instead of geno 1. I'd be willing to bet that if you lost some weight prior to starting, went 48 weeks on SOC (or more if you're up for it), manage to maintain reasonable weight based riba dose adherence, that alone would probably snuff out your virus. Add into that Alinia and maybe elevating your riba and/or IFN for the first weeks of treatment?? I think your chances would be excellent - be thankful you don't have geno 1, that's a real feather in your cap right there, and yet another reason why I definitely think you can put the kibosh on your virus and finally let your liver recuperate back to a stage 3 or perhaps even further given enough time. Stay away from transplant, stay away from ESLD and death - go in the opposite direction! Best of luck whichever path you take.