About Me

My photo
Peginterferon-Ribavirin, Failed it twice. Incivek, Failed it. Sovaldi Olysio, failed it. Harvoni, failed it... Transplant Patient Zepatier and Sovaldi...we'll find out!

Wednesday, February 19, 2014


A few days ago was my birthday, with my leg problems coming and going, the endoscopy looked to be an odd way to celebrate. the night of my birthday had an early alarm wake up from my cell phone. Years ago when i started the third treatment i set a calendar event in hopes of success. it read one word: "Freedom."

 It wasn't the way i wanted to begin my birthday. that hope crushing reminder of my consistent failures.
The endoscopy was not promising as some bleeding varices were banded. exhausted, and drugs running through my system from the endoscopy the next few days were a blur of familiar faces dropping by to take care of me. It reminded me what good friends i have.

I normally celebrate my birthday for about ten days, but this year i scaled it back to one party. the original reason why was because people didn't show up. this year i expected about 20 people, i was surprised and excited to see over forty of my friends in attendance. as i looked around i felt so lucky to have so many amazing friends all there for me.  It was the best present i'd received in a while.

in other news, i am moving forward with steps to start treatment. my hope is for march which really means May, as it can take up to two months to be OKed for RX.

it's free until the end of the month.
and if you can't make it, that's okay, you can always donate. :)

Sunday, February 9, 2014

Drop in cabin pressure

 The last few weeks have been a doozy! My legs have added a new source of frustration, the solution to deal with ascites was to get rid of all that excess water.

I could not have foreseen what happened next, within a week I lost near 15 lbs, turns out flushing all the water out of my system has left me rather bone skinny. After a week of the rx, I was introduced to what has become a new daily battle.

My legs seized, while most of the muscles cramped, the rest Charlie horsed or fell asleep depending upon the angle. For a good near hour I was restricted to the floor, I am lucky in that my friends were all there to take care of me. Ice did very little, heat helped more, so heat and steam became my remedy until they depeleted their usefulness. After talking with a friend of mine she explained a few things about the rx I was on. Turns out, in flushing your system, potassium, sodium and magnesium get depleted easily. To make the balance harder I am on a low sodium diet, making supplements, and fruity snack choices my primary tools alongside water in preventing the debilitating  leg pain.

The pain, I can get used to, I can deal with it. but the frustration is with my newfound lack of independence. It’s a hard concept to take in, to know that where I stand presently, i essentially can’t risk driving too far by myself, and at times I can’t drive, can’t move. i’m getting a pretty good handle on it, which is nice because I’m certain I will be able to stop taking them soon.

Also a new staple to my diet is massive amounts of protein I am to be having a minimum of 40-60gs per day. Luckily I always make sure to do curls and wear sunglasses while I drink my protein drinks.

The Liver life walk team is growing!!! I’m so excited, we’ll be ordering shirts third week of march so sign up before then.

 I also have an upper endo soon, the day after my birthday next week, woohoo. lets hope to keep the varicies under wraps.