I contracted hepatitis B sometime over the last 3yrs - the kicker being docs are almost positive it's from one of the many hospital stays/surgeries I've had; it only takes one person to not follow protocol and break the sterile field. I was put on the medication Humira to treat Crohn's (no one - including myself knowing I had hep b) and the combination of the two caused liver failure and extensive cirrhosis. I had surgery in Aug, 2010 to remove scar tissue and adhesion's in my bowel from past resections - and between the recovery, anesthesia, and medications (mostly for pain) it was the icing (or should I say Ascities) on the cake. I filled up with so much fluid called Ascities (bacterial filled nasty fluid that normally gets filtered by the liver, but when it fails builds up in the bowel) and my incision ripped....and the fluid was spraying out of me. I was rushed to the hospital where a paracentisis (they take a large boar needle and insert it into the bowel...hook up to suction and drain what they can) removed they remaining fluid (there was just about 2.5 liters of fluid left that time...after spraying out easily 3 liters).
I was in the hospital for 32 days, and they worked me up figuring out what was going on - finding the failure, cirrhosis, portal hypertension (hypertension of the portal vein in the liver), and a pulmonary condition called Hepatopulminary syndrome (broadening of the veins in the lungs making it hard to breathe).I wear 2.5 liters of oxygen 24/7 until after transplant (will take a year for the lungs to go back to normal).
Unfortunately I need a full liver - so have to wait until a match is found from a recently deceased person. The transplant team I am working with at The University of Cincinnati has been incredible. I refuse to give up, roll over and just let this get the best of me. I will fight until I have nothing left into me. The support from people on The Crohn's Disease Support Network - CDSN, friends, family, and new friends I've met on twitter have all been amazingly remarkable.
The non profit Warm Giving has commissioned two stunning necklaces from Rachel Miriam - a jeweler to help pay for the cost of post transplant that medicare/medicaid won't pick up (one is made of a light blue Chalcedony stone Necklace 1, and the other emerald quartz necklace 2 with a 14k gold chunk chain. and the other emerald quartz necklace 2 with a 14k gold chunk chain. Lastly another designer Marcia Moran designed these beautiful Earrings. They are also organizing a benefit dinner this winter in Los Angeles - I am beyond grateful (and extremely humbled).
While being worked up for listing - they ran what is called a high resolution CT scan of my heart to get a calcium score (they put you through a BATTERY of tests from MANY different departments to make sure the body can handle such a major surgery. After heart - liver is the most serious type of transplant). During the scan fortunately they caught a portion of my right lung in the imaging. The kicker is ...they found something called Tree and Bud Pattern Growth. This could be many thing from a fungal infection, viral, bacterial, pulmonary disease, or the worst cancer. They had me meet with a pulmonologist pretty much immediately, and they are working on getting o the bottom of what is going on. They seemed to have ruled out fungal, bacterial, and viral ...so hopefully it is just a pulmonary disease; there is a LONG LIST of diseases which can cause the growths. Here are some pictures of my lungs with arrows pointing to the tree and bud and nodules/masses. The nodules are the round spots and are 4-6mm in diameter.
Until they get to the bottom of what is at the bottom of what is growing they can't transplant me out of potential dangers. WELL that is everything going on right now ... Thanks everyone who takes the time to read this...and even respond. Like I said I refuse to give up ..I WILL keep on fighting.UPDATE:
I had a walking test done - and finally got the results. Here are photos of what it showed, and the report from the doctor - here are the results:
They strap sensors to my wrist, and forehead then took me off oxygen. I walked from 1 cone to another. Where it says SP02 is the percentage of oxygen in my blood. Normal is 98% or higher; I got down to 81% and they had to add 4 liters of oxygen to continue. I still never got to normal. If anyone doesn't understand the "requires 4L of 02 to maintain 02 sats of 88%" means with 4 liters of constant oxygen the highest avg I got to was 88% oxygen in my blood. That is a fair amount of oxygen .... and still at 88. When 98% or higher is normal.