Just left transplant hospital

[crossroadsec]

They said i was NOT ESLD. I was cirrhotic, but still had a great amt of liver function. That was a relief. Hmg 11.9 and platelets 33. They were happy. They said that procrit was being prescribed off label usage is why the appeals. I saw all the letters they've written. My ins girl left last week. The new girl n I discussed her experience w ins companies. She said she spends hours every day dealing with that alone. It was a 4 hour visit w staff. I feel confident.
They will transfuse monthly if that's all they can get. But feel certain that appeals will kick in soon. All my labs look good and I'm ready to finish 6 days of Telaprevir n hopefully kick peg back up soon. They really want promacta too in spite of the risks... Anyone on it?
I shud hear VL by Friday. Time for the drive home... Got me some tunes in da car... Karen :)
They seemed certain that w 2 UND behind me, I'm not gonna mutate. Said it would have already happened. Now it's just a matter of peg n RIBA til June.

[Mary4now]

Karen,
Good luck and keep up the good work, thank that body for doing its best.
I was told that mutating has more to do with not taking drugs properly and not so much stopping and relapsing.  anyway I hope the new PI's benefit everyone.....
so glad your responding.
Mary

[eureka254]

That's definitely a BIG win!  Especially with your ascites scare, that's absolutely great news from the TP center.  With the 2 week Undetected, hopefully it will be something you'll never have to worry about again... one less unpleasant road NOT to have to cross! Best wishes.

[crossroadsec]

I just lol at how important words and numbers have become in our lives! We're all warriors. Guys... I love hearing ur news too. I stokes the hope. Aren't we fighting this huge battle and winning?

[GoofyDad]

That's really good news. I also learned from a TP center that my liver wasn't as bad as I had been led to believe. It's a big relief...I kept reading their report over and over. I bet you feel great!

[elpasolady]

Yay Karen!!!   This is fantastic news. I have been so very concerned for you.  ( I have been a little MIA from this forum, but think of you ( and everyone all the time)

No ESLD.....and responding so well to treatment, being a cirrhotic, PRICELESS!  We all receive our blessings in so many different ways, huh?

Keep on truckin and crankin those jams!  Music is essential to the soul!
Hugs!!!

[SunShineGirlie]

wow - what kind of insurance do you have?  I have BCBS and there has never been a question about them covering my meds - They make me go through one of those PINTA specialty care pharmacies but they always say yes to whatever drug my Doc prescribes - I thought all insurance companies worked that way - Sunny

[screaming48]

That is great news Karen, go kick some butt

[dixiechicdana]

Great news!!!!

[Livinontheedge]

Karen,  Hang in there Ninja Women !    Your Stamina itself could whoop any fight.    I not getting all the jest of this, I think its over my head, but I am praying its good news.  I 've got a lot to learn.   In the middle of  Week #4, so far so good, next week labs.   Praying I am UND !      
Keep Kickin Hiney !   xoxoxo  Carrie

[his3707]

Alright!  good news to hear after all this with the procrit!  Sounds like a new day a dawning for you.  

[scoleman]

Fantastic news, Karen.  You are an amazing warrior woman, please don't go mutating on us.  Remember it's not easy being green (Kermit).

Sherry

[jsf52]

Karen, You are amazing and an inspiration to us all.  Our prayers are for you.

[beeblessed]

Oh, I wondered about the mutant thing too, so thanks for clarifying.  Yes, I heard the PI's leave training behind for cells to continue to fight off Hep C buggers.  In the voice of Donatello....AWESOME dudette!!  You are kicking butt 7 ways from Sunday!  (or something like that, LOL)

[crossroadsec]

Thnx guys. Just got official copy of appeal letter. I'm gonna send one of my own. Lol. They're working on the coding. Billy, give it a day or 2. Then have a party! Flcyclist - in my head, I have this whole jogging fantasy.. I think when hep c virus used to be killed by interferon n RIBA, it would mutate and replicate? The protease inhibbies are supposed to make ur cells unhospitable for mutants. Seems like that's what I read from one of our experts.
I once wore a Teenage mutant ninja turtle costume on a flight to surprise a friend. Hahaha! Donatello.
I can mutate. I never know what I'm gonna do next. (:O

[taccs4]

Karen, crank it up! This is good news and I hope it just keeps getting better for you. :)

[flcyclist]

Karen, you just put a big smile on my face.  Your determination is amazing and will get you to the finish line.  You go girl.  Hope you're feeling better and the procrit keeps your levels in line.  

[Vannh9]

Clearly you have lots of life left to live:-) so glad to hear you labs are back up. I don't understand all the mutant stuff, but I am praying you are UND FOREVER!!!!

Take care Lady!

Vann

[HectorSF]

This is great news!!! You are still compensated and if you can successfully treat you may never need to progress to decompensated cirrhosis/ESDL. You are responding really well for a cirrhotic. Keep up the good work!

“They seemed certain that w 2 UND behind me, I'm not gonna mutate.” Please don’t mutate! There are enough mutants around. I think most of them work for health insurance companies. ;-)

Hang tough.

Hector

[working dog]

sounds really great karen.....hgb 11.9....must feel good....billy

[MagTX]

Well what a fantastic day for you, sounds like everything is falling into place for ya.... I know you've been dealing with some of these issues and now things are looking so much better, especially hearing you are not in ESLD, must be such a relief!  I'd be crankin up those tunes also, yea!   :)))))))

This is the first time I've heard of promacta, I'll have to see what this is, thanks for posting.....

[frijole]

Karen
It sounds like a good meeting.

Have you asked the doctors about changing the coding on the procrit requests?  It really could be as simple as that.

I am very grateful that you are not end stage.  Lots of life to go, and on the way to SVR

frijole

[blondie717]

Hi Karen-

Regarding the Promacta, I think Medhelp members 'Hoocbud' (Debi) and Robo229:

http://www.medhelp.org/personal_pages/user/895634

are, or have been using Promacta. You might try contacting them and asking about their personal experiences with it.

    Havnt been on this forum or the computer, Glad to hear your hgb is up to 11.9    Give me a shout Ginger