Out of It

[mckansas]

I feel so out of it on this board. I can't share the suffering you all go thru with current treatment. Very happy about that in so many ways, but I truly feel awful for all of you putting up with this year long super flu. I'm cirrhotic but not a good candidate for interferon. I've made it 37 years, I'll make it to the new drug regimen I hope. Just glad science is advancing in the quest for a cure. Now if if only I make it to stem cell liver replacement!

[his3707]

i feel also it is hard to give support because I dont understand the new side effects of up and coming treatments.  But I can sure give a shot when I hear SVR and send a hug when whatever treatment someone is trying doesnt work.  Keep fighting everyone!

[bluebird305]

I just want to say that I have felt the same way as mckansas .  I feel guilty when I **** and moan about my ****.   I think it's great what you had to say.  It's just what I needed to hear.  When My higher power.  (whom I choose to call God ) pushes us to the edge of difficulty, trust him anyway, because two things can happen.  Either he'll catch you when you fall, or teach you how to fly.  I have to remind myself that I am not alone, and neither are you, Mckanas!  I'm still playing the waiting game.   be well all

[pooh55811]

You are very brave and doing very well dealing with your cirrhosis and liver problems. Hang in there. New treatments are coming. You are one of the gang, just like the rest of us. We have all needed each other to get through the diagnosis, preparations, treatments, aftermath. We are here for you too.

[mckansas]

Thanks my friend. It took me a while to come out of my HE state, but once I got going it's been so much better. The pain gets me down, the unemployment/disability gets me down but I'm finding pleasure in many other things life has to offer for once, instead of working all the time. Someone said, the one thing they never say at your funeral is hey, that guy/gal sure worked everyday. It's the friends and impact you make on others lives.

[Advocate1955]

You are the brave one, my dear!  A few short months ago, you didn't know you had Cirrhosis, let alone decompensated Cirrhosis/ESLD.  You grappled with it, got to a transplant center, got assessed, and got your care under control quickly.  You are the example of self-advocacy and self-determination.  Stay on track.
Advocate1955

[Dee1956]

Hello, welcome, you are not out of it, this forum is for everyone.  Sometimes it takes a while to get your stride going but you seem fine.
Your doctor is right, in the scheme 6 months or so is not that long, considering how long it took you to get to cirrhosis it will be a small blip of time.  Time for you to prepare yourself, get yourself as strong as you can.
I have heard the new meds are so much easier than what has gone before.
Good luck
D

[mckansas]

We are all part of this I just feel guilty for not having to endure the horrible treatment refimen. I feel I'm going to get by easier. Stupid I know. Grateful for my hepa doc waiting for the new medicines. I read about a group of food that have grown a liver from stem cells,  says the technology is at least 10 years away from reality but truly promising in the fact that a liver has been grown from stem cells. If only I get rid of the hep c with the new needs and no liver cancer it's truly amazing. My hep doc says it's realistic I may not need a transplant as we know it with all the research going on. He told me I was controlling the disease very well for a cirrhotic patient so I am very happy but my heart aches for all of you suffering this current regimen.  He said waiting six more months is small compared to all the time it took to get cirrhotic and HE.So I follow their instructions.  So far so good.  It's definitely better than waiting for the limited matching livers available.  I must mention all my years as a pot smoker has helped mighty liver, that and not being a drinker.  He said with the new meds people can go in for years once the hep c is killed. Diet diet diet lactulose and xifaxan.  Fingers crossed. At worst he said if physically in good shape they've transplanted 70 yr old people. Now that IS scary.  So i wait and control. You that are suffering the current treatment are brave.  

[BoceprevirGal]

   No, mckansas, you are SO not "out of it", I always enjoy seeing your name around here, we are all in this together :)
  The new meds coming out are truly a blessing to all, especially those on the Transplant list, so much easier on the liver than the Interferon!
   One thing I sometimes think about, is how each generation of Hep Treaters feel about the advances being made so quickly:  I came on here, and soon felt guilty, because I was a rapid responder to the Interferon (I killed that nasty virus in 4 wks, with just the Inf and riba...and then they added 24 weeks of that awful Victrelis) and I realized that some who didn't respond as well, had to do 48 weeks of that regime!
   Then I read earlier posts and Bio's and saw that some of our oldest members have had to treat 3 times, or more. Some had to do 72 weeks of Interferon, and were left with permanent side effects, etc.
   Then..my husband Treated with a Clinical Study (which I had tried to get into, but was discluded from, for having my AST/ALT too elevated, above a 300/400 ration) and he only had to do 12 weeks, and NO Interferon (an AbtVie study),and yeah...I was a little jealous,and brushed away his gripping ( I know..terrible)
  But then..I told my husband that there are 8 week studies,and even a study where the recipient only has to take one shot, to achieve SVR...just wow!
   I'm just so happy that the meds are making headway, so you can clear your virus,and then, if need be, get the transplant...woot!

[libzo2]

I can feel you reaching out to the rest of us sorry heppers.  We need each other, that is for sure.  I always felt out of it too but no matter our differences, we all share that monster disease.  I am cured now but I remember the battles.  It has molded me as a character in this life play.  On the tree of sorrows, I doubt I would pick another challenge.  Most heppers have no idea how we got our vexation but somehow we found each other and that is a miracle with the stigma that prevails.  It is necessary to know we are not alone.  

I am so sorry you are cirrhotic.  You have a wonderful outlook and your strength comes through your words.  We are a big family and we are here for you too.  You are us.  We are you.  

[dontworry_behappy1]

Well Mckansas...what do you know about stem cell liver replacement?  That's fascinating.  

DWBH