sovaldi-ribavirin post liver transplant

I feel a little better today still doin it one dose at a time. Five or six days left depending on whether they have me take meds at clinic next Tues I believe my meld score was 18 about 5 weeks pre transplant. I had already been diagnosed with cancer in liver. I had a big tumor right against gall bladder. They couldn't treat it like they wanted to because of location. They did alcohol ablation burned it but also did other damage. The reason for telling whole story is because after treatment meld score jumped 5 points. So In answer I am pretty sure it was23 I know about how hard it is being laid up in bed a lot there were times I was so weak and sick I couldn't even feed myself lived on potato soup and oatmeal a lot of the time. But there were times I could get out a little my advice is do it when you can . one of the hardest things for me was concern for my wife. We love one another with a love most people don't know exists. We both prayed a lot and trusted God. If you can be happy in the. Midst of all the suffering and uncertainty. If you can savor every moment together enjoy each other be grateful and not bitter. Time will pass quickly and everything will be easier. I know sometimes it is hard to hear these things but it really makes a difference. NOW about heroes the real heroes are the caregivers. Gotta love em for their heart and their stamina. Bluz

Bluz, I think you have much to offer others, just like many here who so graciously wade through the emotional ups and downs of difficult situations for others. Doing this while in the midst of their own health problems can be a challenge, but that is what I love about our forum. Everyone helps others and collectively we support one another.

Themister was diagnosed in 2005 when he had a routine physical. He rarely went to a doctor. He was having slamming fatigue which was odd, and had good insurance. He rarely had more than a cold now and then. He was tested for everything, and his anti-bodies showed positive HCV. He is a GT3, was 55 years old when diagnosed. Biopsy-Grade 2 Stage 4 cirrhosis.

Until that point he was very healthy and physically fit, still in the same size clothes he wore in high school. He was not a drinker or smoker, though he but did smoke and use alcohol as a much younger man.

He started treatment the 1st time with interferon/riba 2005. Worked every day through treatment, but failed at 4 weeks post end of treatment (EOT). Decided to live life and not worry about HCV, hope his liver would last his natural life.

In 2010, he had a gastric bleed, decided to treat a 2nd time in 2011-12. Complications and bedridden 4 months...one surgery, rescue drugs, and a lump that was benign. We lived 3 hours from any hospital in a rural NW state with icy roads and only a rural health clinic staffed by a PA. Not easy for his disease. But he did obtain SVR!! July 2012.

Just when he regained his health after treatment #2, and he thought he now would just manage the vericies etc....his MELD started to rise, and he was dx with vericies in the cardia. He needed a TIPS, which was done Jan 2013. Instant HE (hepatic encephalopathy), with referral to transplant center. Listed our home for sale that he built just before his gastric bleed. We moved 1,000 miles last year, rented for 6 mos, sold the home at a huge loss, had transplant eval, got listed. He broke his shoulder and his HE was ridiculous during all of 2013. We bought a home in AZ in Aug 2013.

He had a hepatic seizure 8 months ago, turned blue and I thought he died. But the HE has been much better controlled since the seizure.

Stuck now with MELD mid teens, ---too sick to enjoy much, not sick enough for a transplant. Thanks for asking. Will enjoy having another voice on the forum! Big Hugs

Bluz, your post inspired the following dedication...

https://www.youtube.com/watch?v=9jK-NcRmVcw

Please enjoy!

HF

After 11pm dose 4 days left . feel like a sick puppy but I feel more like I can finish now than before. Thanks for encouragement.. I have talked to a lot of people pre transplant and had privilege of seeing successful transplant . I am hoping to finally enjoy better health after treatment. My liver Numbers are good since starting treatment first time in 6 years. Most encouraging thing I've seen. Now just to hang a few more days and hope I'm cleared permanently. This group has really helped me to hang on to hope when very ill. I'll let everyone know how it goes. And try to be available for others. Have one friend about to have radiation injection Into tumor I'm hoping I will be well enough to help him through. He's not a candidate for transplant. Ouch! Those of us WHO do are very blessed. Thanx again have a great day Bluz

Just took morning meds only 2 more days of Sov- Rbv. I sure look forward to getting back to usual hand full of pills. I am hopeful that treatment works after all the setbacks and complications. If it works it's Worth it all and more. Hoping you are having a good day. I know how hard it is to wait not knowing for how long Just hold on tight to faith. This too shall pass. Have a blessed day Bluz

I play more blues than anything else .

Three more doses left struggling to keep this one down thirty more minutes and I'll be past worrying about losing it. Weird wasn't nauseated for a week now it's back with a vengeance . looking forward to waiting room for sure. I sure hope this works don't want to have to do it again. Heard anything about possible one month treatment?

Fingers and toes crossed for you too....that the labs tell you that you are undetected and life can resume its more normal course.

Hugs,
Mama Lama

Well!! You made it to another finish line, Bluz. You will feel better and better without the Riba. Know that it does help to keep up the water intake until it washes out of your system a bit. I have every hope you will obtain SVR. Just knowing you are finished must do wonders emotionally. Oh..I got your email when you were unable to post ...thanks for that update. Everything really is going your way, and I have much hope you will soon feel up to speed.

Don't you be a stranger around here just because you finished treatment. :) You can be very helpful as you get past treatment and on with your life. Big Hugs

Hiya Miz , hoping you and yours are well. Still hanging in there. Waiting to see if treatment stuck. Now that platelets are normal I have developed blood clots. It's amazing to me how we learn to wade through the problems related to this disease. One thing for sure it builds strong people. Have a great day bluz

You swung that pendulum a bit too far, on the platelets! It is always something, isn't it. Hope the riba side's are moving out of your system. I am keeping hope alive for your successful SVR. Don't forget to give us the news and keep in touch! Big Hugs