Starting Harvoni in a week - Blessed by God!

[Allen Cunningham]

Diagnosed 8/97 with HepC
Liver Transplant 7/2004
Genotype 1b, last biopsy:12/2015: F-0, Slight Inflammation, TX Naive
v/l: ~600,000 - ~1,000,000 ALT: 26, AST: 26
Starting 12 wks Harvoni in Jan 2016

I was diagnosed 8/97 with HepC, I probably got it in 60's or 70's while in Vietnam or as an occasional IV drug user. Moved to  the SF Bay Area in 1997 from San Diego, I first went to UC San Fran and was told I was not a candidate for IFN since my liver was too damaged (I had cirrhosis) and that I needed to get on the transplant list or I would die, I was stunned as I drove across the Golden Gate bridge for home and cried like a baby in my car. I still didn't have many symptoms, (my Gastro told me that a person can function on like 20% of a liver) but over the next few years that would change big time as the symptoms came!

Hearing that you have Cirrhosis is such a horrible shock, and you feel immediately stigmatized, like you are perceived like drunk in the gutter who wouldn't stop drinking! God had helped me get off drugs in 1978 and I changed my live and dedicated it to God and hadn't used anything in 20 years and now I was so angry at God for not protecting me from this disease. To be on the transplant list you have to submit to the embarrassment of random drug screens at the lab

I started feeling really crappy every day, digestive problems, sleep problems, having bloat, so had to reduce salt intake, my Gastro asked if I experienced confusion, it's caused by excess ammonia in your bloodstream that a normally functioning liver clears out. I had to start taking what I called 'Pancake Syrup', the excess ammonia binds to the sugars and it's excreted out. Then came portal hypertension, cause by blood vessels expanding from backed up blood, all part of the liver not doing it's job.

Then came the bleeds caused by Esphogeal varices, blood vessels in your Esophogous explode and your stomach fills with blood. I was rushed to the ER and my poor wife thought I would die. It happened several times

Next comes Bacterial Peritonitis casued by infected belly fluid, 50% die from this, I had it 3 and was hospitalized 3 times at UCSF, my diganosis all of this time was the dreaded ESLD - End Stage Liver Disease!

And I wasn't nearly as bad off as some of the patients in the transplant clinic, some had to regularly have fluid drained from their belly, some couldn't even walk to the mailbox without terrible fatigue, at least I never turned yellow, and I worked full time through all of this

Only God kept me alive. With all of this I still wasn't high on the transplant list because in California there are so few livers to go around you need to be in liver failure or have liver cancer to get a transplant.

But in 2004, my bro in law stepped up and offered to give half his liver and I had one of the early living donor transplants by the fines transplant surgeons in the world, Nancy Ascher and John Roberts who started the program at UCSF.I was 57 years old.

Since then I have been doing fabulous! I had gotten so sick for the previous 7 years and after the surgery I felt like I was 18 again!

The Hepc always comes back and my nurse coordinator at the post-transplant clinic said Cirrhosis usuall is bak in 7 years post-transplant, but I am 12 years out and not even any fibrosis, just some mild inflammation according to my biopsy last month.
And now I have been approved for Harvoni and it will be shipped on Jan 14th (Organ transplant patients are at the top of the list for Harvoni)

I have noticed the last 4 months a mild ache on my right side that happens maybe a couple of days a week. I take a couple of Tylenol and that stops it, but I think it might be due to the inflammation and I think the Harvoni should clear it up

Very blessed by God to get through all of this, and come out much better!

[KimInTheForest]

Congrats Allen! That's great news that you will be starting treatment. Good luck. )

kim

[sapphire101]

Wow Allen your story really struck me because you truly have been through the wringer over hepatitis C.
Your brother in law is unbelievable in his generosity and caring to donate to you- how is he doing? Are there any problems for him with just half a liver? Why aren't more living donations done. I had no idea this was possible.

Congratulations on your starting harvoni and please keep us updated on your progress.

[Allen Cunningham]

Hi sapphire101 -  He's doing great! He actually gave 2/3rds of his liver, and as the Transplant surgeon said Livers grow back to full size in a couple of months, it's the only internal organ that does that.

They started doing living donor transplants in the early 2000's.

Thanks, can't wait to get started and clear this monster out of my body!

[HealthGal3]

Yay Allen!

You doing the right thing by getting on this drug.  Why ruin a beautifully donated liver?  This will be the final leap for you.  Make sure you read the treatment forums on side effects.  Everyone is different, but make sure you drink plenty of water.  That's the main consensus of every person on this forum.

Let us know how your coming along.

Health Gal

[Allen Cunningham]

Hi Health Gal - Thanks for that, I think you are going to be cured in just a few days! How great!

I got a call from Express Scripts today saying I will get a delivery of 28 pills over-nighted by Fedex on this Wednesday, they put me on with a Pharmacist making sure there were no interactions with my current meds.

I will take your advice and hydrate often. The RX said they make some folks tired and others stimulated so I'll I will have to decide when to take them AM or PM.

[HealthGal3]

Allen

Make sure you take your meds at the same time everyday.  I take mine in the AM, as to take any vitamins or such in PM.  It's important that the drug constantly stays in your system during the treatment course.  I was told not to take any prescription acid reducers as they interfere with absorption.  It's alright to take Tums at least 4 hours after meds.  No St. John's wort or Milk Thistle.  Just tell the pharmacist what other meds your taking and follow instructions.

Soon you'll be on the road to recovery.

HealthGal

[Allen Cunningham]

Thanks, I'll remember that!