Tuesday, October 27, 2009
Our big day started at 6ish yesterday morning. Around 8:30 we were called into orientation, where they briefly described the anatomy of a liver, what a transplant consists of, and of course chopped down the entire rain forest to supply me with the amount of paperwork I got... including my "GOLDEN TICKET" (A.K.A. the boarding pass that every specialty doctor, social worker, financial and nurse cordinator had to sign off on). We then started musical rooms, switching back and forth with the other patients (talk about making you feel like you aren't alone... to them transplants are an everyday thing).
They went over the basic things I can and cannot eat, drink, or take medically. Dental work and tattoos have to be pre-approved by my team of doctors, and blood tests taken to see if I need a platelet transfusion first. They gave me my order form for my MedicAlert Bracelet, gave me contact numbers, recipes, and idiot proof pictures with big "X's" over words like Aspirin, ibuprofen, alcohol and salt. Then told me about the patients they have upstairs - they can't move, some can't breathe on their own, they have had their stomach drained repeatedly, they are vomiting blood, and they -- they are still waiting for new livers having MELD scores of 25 and above.
There was so much information, but here it is... (summary style) my MELD score is 14 (as of July's lab tests), and unless USC sees a mass -- which as of today I have NONE! I will get progressively worse as I climb the MELD score ladder, since there are just not enough deceased donated livers to go around. So unless i want to get sicker and sicker I am going to have to start making travel arrangements to regions able to transplant patients with Meld scores as low as 14.
The surgery is going to be tough, and though statistics are great that I will survive, there is a chance that my HCV will come back with a vengeance and destroy my new liver within 5 years, also, a risk that I will lose the new liver to rejection. They are very concerned with my tumor marker levels and will continue to do CT scans every three months until either a mass is seen, I receive someones precious gift as a living donor, I reach the top of the list...or God forbid, until I glow green from all of the dye they put in me (hehe). Secondly, they are very concerned with the amount of weight I have lost in the past 8 months (70 lbs). The doctors want to get to the bottom of it to control and monitor it.
So in a nut shell, I need a new liver, there are no visible cancer tumors, and without a living donor I will probably be flying to Tennessee (where patients don't have to be bleeding from their eyes to get a new liver).
So until my next post, when I hope to inform you more on how to be a living donor, who qualifies, and what my blood type is... hint, hint :)