HARVONI ~ HERE I COME!

[Shovel72]

Had an endoscopy today. The Dr. found that I now have portal gastropathy. My platelets are still 63.
I called my hepatologist yesterday in Philadelphia, and the PA at EPGI and kind of went ballistic, as they haven't even begun to submit it to my insurance.

I have Geno type 1A Hep C (20+ years) - 3rd stage cirrhosis, 2 years ago esophageal varices (very bad and was hospitalized for 5 days) my BP is 178/91 and i now have diabetes.

I just received a phone call from Accredo - the Harvoni was approved and is being shipped to my Dr!!!
I'm finally seeing the light at the end of the tunnel.

[Dee1956]

I see, I thought when you said 3 cirrhosis that you meant 3 fibrosis
Sorry about that.  Sometimes when I try to help I overstep, while my heart is in the right place my foot is often in my mouth.
I only mentioned that cirrhosis F4 because I wanted to make sure that your doctor would monitor you more closely as someone with cirrhosis.
I was diagnosed with cirrhosis in 2008, when I started tx they took my blood every week to make sure I was ok.  
That was back when interferon was part of the deal so that could have been part of it and I started with low platelets.

Again really happy you got the Harvoni

[flyinlynn]

F4 means fibrosis score 4 which is cirrhosis.

I also have cirrhosis DX in Jan 2008 and had varicies banded and also have portal gastropathy aka watermellon stomach.

Severity is bacisally based on your meld score  which is a composite of several scores or also your child pugh score here are some links about both

http://www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease/meld-model-unos-modification

http://en.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease


http://www.mdcalc.com/child-pugh-score-for-cirrhosis-mortality/

http://en.wikipedia.org/wiki/Child-Pugh_score


using the calculators and your lab tests you can calculate for yourself where you stand

[Shovel72]

I definitely have cirrhosis. I just don't know how advanced it is. They never answer that question when i ask

[Dee1956]

Hi I looked it up and then I put the answer on the wrong question...sorry :) brain fog

Hi I looked up portal gastropathy and came up with this.  I am not the sharpest knife in this drawer but from your symptoms, it sounds to me as if you have cirrhosis.  Maybe one of the other guys on here will comment.

http://en.wikipedia.org/wiki/Portal_hypertensive_gastropathy

[Dee1956]

Hey there, wow you have gotten a lot of information since the last time we "spoke" ha ha
I don't know what portal gastropathy is but I will look it up.
I am sorry you had varices.  I am surprised that with the varices they are saying you are stage 3 vs 4.
But....the main thing is that you are going to kill the virus and you can improve.
My platelets were at 67 when I was first diagnosed.  I was taking a lot of Advil at the time.  I stopped all Adivl, aspirin and my platelets went up to 100.  I was lucky as I could not have gotten on the trial I did without that.

I am sorry you had to yell to get some action but sometimes we do have to do that.  I learned on treatment that I had to fight for myself to get what I needed.  It was frustrating being so sick and having to do all the phoning and faxing, etc but it did work.
I found that I was stronger than I ever thought I could be.  I think you will as well.  Like I said earlier, try to get copies of all of your blood work and test results.  You never know when you will need them.
Oh we have a Heptatis C forum as well where you can get a lot of help during treatment = tx
Please keep in touch, Dee