Tuesday, October 19, 2010

Saw The Doctor Yesterday ...

I saw my Hepatologist (Liver Doc) yesterday and this is what I learned. My viral load (which means how many times the virus has replicated in my system) is very high at 110,000,000. The cirrhosis they saw is more extensive then they first thought. The doctor is starting me on a fairly powerful medication called Viread - originally approved by the FDA in 2001 to treat HIV patients, and in 2008 approved to treat Hepatitis B (HBV) patients

That is all I know right now ...I want to thank everyone for the incredible support! Thank you Thank you Thank you! As soon as I know more I will update.

All my best,

Sunday, October 10, 2010

1 Biopsy Back - 2 to Go!

I received the results of the first biopsy - the one they could do locally and not send out.

To no surprise came back positive for Hepatitis B. Unfortunately it also showed that the damage is moderate to extensive. It also appears that I definitely have had Hep B for 2.5-3yrs now as someone who first gets sick their numbers are very high - mine were low (which means I've had it for "x" period of time). The biopsy also confirmed the cirrhosis on the liver, which is also extensive.

The next step is the results of the 2 remaining biopsies to identify which strain of Hepatitis B I have - as some medications work better on certain strains and vice versa. The last biopsy is to rule out Liver Cancer which is something that chronic/advanced Hepatitis B can cause.

The goal of treatment is to keep the function of my liver better then it is, and to prevent the cirrhosis from spreading. Since I already have a fair amount of damage talks of a transplant have been discussed. I will know more after my next appointment which is on the 18th. The other two biopsies won't even be back until mid/late this week.

I am handling things slightly better - but still overwhelmed and scared. I know I have a lot of amazing people rallying for me ... which is incredible. I am very grateful for the simple comments and well wishes. I WILL FIGHT this damn disease - not going to roll over. The treatments available today are very promising - considering 10yrs ago there were NONE and it was essentially a death sentence. NOT ANYMORE!

All my best to everyone,

Monday, October 4, 2010

Here are SOME Answers - UPDATED 6:34pm est 10/4/10

Hi Everyone,
A lot of people have inquired as to my health since surgery. Surgery went really well - and for the most part had an easy recovery (minus a minor setback of tearing below my incision 2 days after being discharged. I felt good - the pain and nausea I was experiencing before the surgery was GONE.

They mostly removed a lot of scar tissue that had formed over the course of years from previous surgeries. This scar tissue was causing bowel loops to adhere together causing bowel obstructions - and the ridiculous pain and nausea.

Over the course of the month following surgery started to feel generally unwell. I was experiencing extreme bloating and distension - as well as a lack of appetite that got worse over the last few weeks. I also began having trouble urinating. What I was taking in was not coming out - and an analysis showed a lot of protein in my urine.

My general physician ordered a CT scan (for this past Friday Oct 1st) to check for anything - and they found something. I got an urgent call Saturday morning from him saying the CT scan showed a build up of fluid in the abdomen. The build up of the fluid is called ascites and I was full of it. In the ER they had to do a procedure called a Perentecious where they stick a large needle/catheter through my skin into the bowel and suck out as much as possible. They were able to remove 2.5 liters of fluid - not all of it but enough to keep my kidney's from shutting down. I had so much fluid it was putting pressure on the bladder making it hard to urinate, pressure on my lungs (was wheezing bad) and chest pressure.

NOW Ascites?!?! you may ask - what causes it? After being admitted and the battery of tests they performed and ordered (an ultra sound, tons of blood work to check for nearly everything, and this morning I had a scan which checks the blood flow from the spleen to the liver) Strange sounding right?

The ultrasound confirmed why I needed to be sent to the ER immediately, and why I am having all this fluid being formed and building up (lost 13lbs in fluid alone from Saturday to this morning) - I am currently experiencing liver failure and cirrhosis of the liver. The question is now WHY does a 30yr old who never drinks having cirrhosis and liver failure?!?!??! The doctors have started the puzzle - getting pieces - and are putting together the puzzle.

I am scared - not gonna lie. For years I have been dealing with Crohn's and it's joys....this is out of left field unknown territory for me. Until I knew some specifics and saw the Liver doc I didn't wanna publicly say anything. Thank you for all the concern, questions, and well wishes. I will keep updated - the next step looks to be a liver biopsy tomorrow or the next day.

HUGS to everyone - and all my best,

UPDATE 6:34pm
Literally right after I posted this the Liver doc came in. I have Hepatitis B - I am pretty shattered right now. Liver biopsy tomorrow plus endoscopy. Plus talking about treatments. I just right now am scared ...but I know I have incredible people in my life.