rocket ride

[neptune235]

Today has been a day for the ages.

To recap a short history:  gt-1a,  cirrhotic, 57yo, originally infected 40 years ago in boot camp.  I've failed txt five times in the past, including last year sovaldi, ribavirin, and peg-interferon.  I relapsed after achieving UND.

I've been experiencing two complications from cirrhosis.  G.A.V.E. (gastric antral vascular ectasia), associated with cirrhosis although the exact causal mechanism remains unclear, requires periodic upper endoscopy during which oozing vessels in the stomach are cauterized.

I've also been diagnosed this week with hepatopulminary syndrome.  

So, just before today's endoscopy, my hepatologist decided to put me on the transplant list.  This way the adminiatrivia is out of the way and we can move quickly if I begin to decompensate.  

My Blue Shield PPO denied the prior auth request for Harvoni, and denied my appeal.  Their reason was the sovaldi relapse.  So...we applied directly to Gilead Support Path for financial assistance.  

I came from the endoscopy today, mulling over my new status on the transplant list, to hear a voicemail left by Gilead.

They've approved 24 weeks of Harvoni for me, and I am forever humbled by their generosity.  In a very real sense, they may have saved my life today.

It will take a few days to get meds in hand, we're going to add ribavirin and procrit, and it will be sometime before that arrives.

But, I'm looking forward to starting tx #6, and I'm hopeful for the future.

[Ekkiemom]

Hi Neptune. I'm so sorry to hear you have relapsed on your past Tx's. I can't imagine how disappointing u must feel. So happy that you are beginning treatment soon!  Gilead seems to be compassionate in terms of people being denied by there insurance.
I'm also 1a and am wtg for April 9th for my final EOT12, kind of nervous!
Wishing you the best on your next Tx.  Time to serve the eviction notice to the dragon. Stay strong and visit the community to update us on your progress ok
Peace
Deb

[AWorriedMom]

I am so glad this working out for you!!! Wishing you the very best.

[Rbeth]

Wow! TWO (2) miracles in one day!!
So grateful you have docs with ability to dx, good forethought, Gilead's awesome help, and opportunity to have a virus less new liver!! Just wow!

Not to mention your own patient, fighting spirit!!

This is a day for YOU!
All blessings to you ,
Randy

[pooh55811]

I am sorry that you are having these medical problems. I know it has to be difficult.

You have been fighting to rid yourself of Hep C for years. Unfortunately, the past treatments failed you. It seems your insurance company has also failed you by not approving Harvoni. At least Gilead came through to help you.

It is wonderful that you will be able to start Harvoni and Riba soon. Hopefully, this will be the treatment that cures you of Hep C.

Wishing you the very best, and SVR, going forward.

[patra_]

What blessed news!!!

This double information should be the uplifting jolt to carry you forward to and through treatment.  

Keep up that wonderful 'go forward' attitude and slay that Dragon!

Pat

[HectorSF]

Hi Neptune.

I’m sorry you have been having such a tough time lately.

You are one of the people who most needs treatment so I am glad you will be starting soon. Once you get started hopefully you will start to see your complications from the cirrhosis diminish as others have and become more manageable as the progression of your liver disease ceases.

Please keep in mind, having failed one Sovaldi treatment is NO medical barrier to retreatment and SVR! As you may know there is no resistance created by Sovaldi and recent study data show very high SVR rates in those who have retreated with a newer Sovaldi based regime. I myself previously treated with Sovaldi with Sovaldi in 2012 as one of the first 61 cirrhotics to ever use the drug, then called GS-7977, for 48 weeks but unfortunately relapsed before my transplant. Since hep C recurrence after liver transplant is universal, I recently treated with Sovaldi, Olysio + ribavirin and was recently still undetectable 8 weeks after EOT. I will have my EOT 12th week viral load tomorrow to find our if I am finally cured. Obviously the odds are excellent. Dr. Noah Terrault (my hepatologist for the last 7 years) and her staff were the ones who have managed all of my treatments and are involved in treating treating all pre and post transplant folks at UCSF.

Here is a study where folks (15% had cirrhosis) retreated for only 12 weeks but with

Retreatment of Patients Who Failed Prior Sofosbuvir-Based Regimens With All Oral Fixed-Dose Combination Ledipasvir/Sofosbuvir Plus Ribavirin for 12 Weeks - AASLD 2014 Boston Nov 7-11

Conclusions:

* LDV/SOF + RBV for 12 weeks achieved 98% SVR12 in patients who failed prior SOF-containing regime.
* LDV/SOF + RBV for 12 weeks was safe and well tolerated.
* These data support the treatment regime as an option for GT 1 patients who have failed SOF +PEG/RBV or SOF + RBV regimes.

As you may know I received my liver transplant 15 months ago now and do a lot of volunteer work at our liver transplant center. Me and my fellow transplant friends often visit hospitalized folks both pre and post transplant and have been there every Tuesday for the last 5 years for our liver transplant support group where people meet others waiting for or post transplant.

I am not sure where you are listed (CPMC, UCSF or Stanford) but if there is anyway I can help you through treatment or if need be, liver transplant, myself and others will support you any way we can. We have two friends who will be getting their transplants within the next few weeks. We have through it and know the reality of the ups and downs. We also know that no one does this alone so we are there to support others who are now going through what we have ourselves been through.  

Hang in there!
There is a good and healthy life beyond advanced liver disease.

Hector

[fretboard]

Glad to hear you'll be getting the Harvoni.  WTG!  Wishing you a fast UND on your way toward being completely HepC free=SVR.

[Rbeth]

Thanks Hector.... Your compassions lights up this forum. Prayers for EOT- CURE

Neptune, I'm far away, but not in thought & prayer. These offers of friendship are so priceless, right? As will be a healthy life that awaits you... CURE!!

All best blessings,
Randy

[Livelife777]

Neptune   Am also wishing you much success with Harvoni.  Your time has arrived and your NEW life is about to begin.
Warm Wishes
......Kim

[hepcandme]

Just wanted to send good wishes your way and Good luck with treatment!

You have already been through so much and I am humbled by you and all those who led the way to this generation of medical treatment and cure

~ Linda

[neptune235]

Thanks, everyone, for all the good wishes and words of encouragement.  I'm feeling stronger already!  :)

Thank you as well, Hector, Your offer of support is extremely generous -- I will attempt to message you with some more detail of my sitch.

Also, duly noted that there are no resistance issues to speak of with retreating with Sovaldi.  This is Blue Shield's way to keep a lid on its costs.  They invent additional requirements for treatment above and beyond the FDS labeling.  It's outrageous!

Thanks all, will check back in periodically.