Tuesday, May 10, 2011

Dr Drops a Major Bomb ...

I saw my new doctor again this past Friday for a followup from blood-work, and my recent trip to the hospital. As we were talking my father brings up the question/topic again of a liver transplant - and his feelings. He said I need to start planning for one. he recommended 4 places where he has sent patients, and have had good experiences. He suggested: Indianapolis, Ohio State University, The Cleveland Clinic, and The Mayo Clinic. After deciding where I want to go, will need to travel there to be evaluated by the transplant team. They go by factors - one major being something called a MELD score. MELD stands for Model for End-Stage Liver Disease. Right now my MELD score is about 15/16, and anything over 20 is dangerous. Even if the hepatitis B viral load drops, the damage (cirrhosis) has been done.

Needless to say I am scared, overwhelmed, frustrated, and confused. What ever the future holds I have a long battle ahead of me - something I plan on fighting. I truly hope I have the strength.

Thursday, May 5, 2011

It's been some time ...

Hi everyone sorry I haven't written an update in some time. I hope that everyone had a nice remaining winter - even though it still feels like winter in some areas - I'm glad spring is here!

I wanted to start off by thanking the website http://www.nursingschools.net/blog/2011/05/the-40-best-blogs-for-crohns-support for featuring this blog in their top 40. I mentioned to the site that it truly is a humbling honor to be recognized with the 39 other blogs/resources. It inspired me to give an update ... also it's 7:00am and I maybe got 3 hours of sleep.

A general update: Switched hepatology doctors this past month. The doctor who diagnosed me and, became my doctor just because I was in the hospital he happened to be on rounds. He was incredibly frustrating in he never gave answers or explanations to many issues going on with my body. All my father and I could really get out of him was that my viral load was going down (which is great btw in the hep b area). After my last hospital trip - which was futile - enough was enough. Through recommendations met with a new doctor and so far things are going well.

My liver function is the big issue right now. The new doctor took blood work, and I'm sure is going to run some tests to see what state the cirrhosis is in and if its spread. I have been having a lot of issues with edema (retaining fluid) causing my legs and stomach to swell. It's gotten to the point where my feet are very numb, it's challenging to walk, drive, and other activities because it creepily feels like I have no feet. I also have an amazing appreciation for pregnant woman as my belly is very distended and hard. I still can't believe it can stretch as much as it has! I've also started experiencing confusion, shaking of the body ...sometimes to the point you would think I am shivering after jumping into an ice cold lake yet I'm not cold, hard to eat cause I feel so full from all the fluid, dizziness, and nausea/vomiting. We'll see what this new doc has up his sleeve.

I had a port-a-cath (great info on wikipedia with images)installed on Thursday April 28th. For those who don't know a port-a-cath is a somewhat permanent central line. It is implanted under the skin (normally below the collarbone) and is accessible for IV usage, blood draws, CT contrast - etc. I have horrible time getting an IV and blood draws due to my veins being very small and overused through the years. The port can stay in for over 5 years, and I can't even feel it's there - truly amazing.

Crohn's disease wise apparently the last upper scope showed a reddening and thickening of the stomach lining. A lower scope showed the same reddening and thickening in my colon. Since having the scar tissue and adhesion's removed in August 2010 has really made an improvement for the most part in the Crohn's area - just need to get this damn liver under control. CDSN is doing well! We celebrated 1.5yrs on March 24th, 2010 and as of today have 1,138 members. I still can't believe how it is growing, and the kickass people who make up the community.

Alright this is much longer then I had anticipated so going to cut it off. I hope all are well, and a big thanks to those who take the time to read my tiny corner of the interweb =P

All my best,