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!

Tuesday, May 6, 2014

This chamber has no windows and no doors.

There are a lot of unexpected things when a major organ doesn't function properly. I went in last week for my Cardio Pulmonary and Arteal blood gas. i found out that my lung capacity is within the normal range which was great, however it seems that for each breath i draw, i only hold in about 56% of it's oxygen, a normal human would be about 80. for every 3 breaths you take, i take 5, it explained why certain tasks get me winded.

My esophagus has finally calmed down, since the endoscopy, but i can't say the same for the rest of my GI tract. it's been an escalating issue and it appears to be dying down now. I had heartburn from nothing, water anything, it wouldn't matter. and following that would extend a sharp pain in my liver and then what i believe to be my spleen.  but the more annoying fact from this meant, a tremendous amount of gas. Bless my girlfriend's heart for putting up with it. I felt sorry for the kids, friends and my co-workers. Especially inside the Haunted Mansion..I gave them a new chilling challenge. 

With more time passing, I'm finding that my GI tract just doesn't like a lot of things. So, what brings me here tonight requires a different kind of introduction. As we enter into the...the Twilight Zone. Last week i received a letter, well three letters. The first was a letter from Personnel  explaining to me my options, a sobering reminder of my new limitations. The other two letters were approval letters OKing the RX for treatment, a fantastic step in the right direction. It was nice news going into a fun filled weekend for two of my amazing friends' birthdays, On Sunday, with the help of a wheelchair and a healthy grip of pilots, i was able to last a full day at Disneyland. 

It's an odd perspective, from a wheelchair.I'm not really certain what i expected, but what i noticed was a handful of people who were so consumed by themselves that anyone who doesn't look like what they expect a disabled person to look like was cause to comment. The looks from people, and the comments were ignorant of the idea that a person could be legitimately in need, and instead favored the idea that we should assume everyone is perfectly capable and simply dishonest. Projection is a funny thing for those too enveloped by their own unhappiness so much that the joy of trust is a light far off in the distance. It would be excellent if the clouds of negativity leave their space and remind them the path to hope is but a stone's throw away.

Disneyland represents a lot to me, it reminds me that no matter who you are, what you can do, there is a place where you are always welcome. It has and always will be a symbol of joy and hope to me, no matter what else is going on in my life, Disneyland has always been a comforting place to escape to. It is a bustle of madness all colliding together forming these intricately crafted experiences and lasting memories. it is a reminder that through the Chaos of life, comes beauty and joy.

Last week i was notified that my viral load was only around 2.5 million. ( to help explain viral load, think of it as, the bigger the number the faster the growth rate of the virus and the more it can infect healthy cells) The number was even more fantastic news, as it was much lower than the near 4 million i assumed i would be near.

Today i received a call from my mother explaining that i would be able to start the treatment as soon as this weekend. which means that in a little more than six months, i will zero out. (technically 6 month  post treatment and 1 year markers really show "cure.") But it's terribly exciting news and it makes me the best kind of nervous. 

For my 29th birthday, i will be Zero'ed out, and hopefully my 30th, i will be cured and recovered as i can get. 

No comments:

Post a Comment