First Step Down

UCLA has accepted Mark into the Liver Transplant program... YAY! What this means is the first step in the process is completed. Next...UCLA will contact Mark and let him know what score he was assigned. You need a 28 out of 45 to actually receive a liver transplant. As one's healthy gets worse your score goes up. Since there is a such a high demand for organs, you must have a score of 28 or higher. After we find out Mark's score and any other details they share with us, UCLA will contact Blue Shield (our insurance). Then Blue Shield will need to also approve the transplant (basically the insurance company needs to let UCLA know that they will pay for the transplant when it happens). And then Mark will be on the list. Sorry for the clunky explanation, I hope you catch the jest of what I am trying to share with you.

Revised Blog, I didn't like what I wrote before...

Mark had more tests this week for the Liver Transplant Evaluation. A t.b. test and a respiratory test. He scored super high and his lung functionality is over 1oo%. Every test he takes he passes with flying colors. If it wasn't for the pesky cancer tumors in his liver he'd be in perfect health, but isn't that the truth. His doctor upped his Nexovar dosage to 2 pills in the morning and 1 in the evening. God willing his feet don't get all yucky and hurting again. But more than anything the Nexovar gives him what we now call the Nexovar Naps. We all use to make fun and call him Mark-colepsy because he could nap anywhere, anytime, ... in a edit bay when on a late night on- site, on a friend's couch during a BBQ, in his car, you name it ---- the man could work long hours but also was the same guy who could sack out on your couch during the SuperBowl. OK I veered off subject but you get that point "he and jonathan now both need to take their naps". Gives me time to catch up on my TIVO'ed reality shows. :)
At the end of today we heard from UCLA and atlast they have all the tests they need. Amen... So now at some point in the near future the board will meet and present his case and discuss him. I am amazed at how nonchantlant we both are now about this, that and everything. We are now just at odd peace with finding out info when its given to us. Not losing nights of sleep until we get the next result, or whatever. We want to live a normal life in between Liver Transplant tests, evaluations, CT Scans, blood tests, etc etc etc. So we squeeze in normalcy and enjoy every last drop. I so appreciate a nice boring night of a Block Buster movie and a frozen lasagna. How lucky am I, is what I think to myself, because I remind myself "this too shall pass" --- and that goes for the good times and that the difficult times.

Hang onto your pancreas!

Ok we were at our UCLA oncologist for a routine check up on Wednesday morning. I was hitting these big speed bumps in their parking garage and I called out to Mark "hang onto your pancreas!". We almost died laughing at ourselves. Speaking of UCLA Mark heard from the coordinator in the Liver Transplant Center this week. She informed him that they realized they forgot to book him for 3 more tests he needs for the liver transplant evaluation. So he is working with his insurance to get those scheduled. So many tests...so little time. She also informed him that most likely he will get the rating of an 8 from UNOS (the organ transplant national committee), he needs a 28 to qualify to receive a liver transplant. Which of course is discouraging. Its such a long story as to why he is only an 8 but I am going to try to make it brief. Cancer tumors don't effect the functionality of the liver until there is like a million tumors. So she said UCLA will probably reach out to UNOS and plead Mark's case on his behalf in an effort to bump him up on the list... etc etc. Really if its not one road block its another. We are amazingly taking them all in stride because we have learned through our Eckhart Tolle "A New Earth" that you can't worry a problem away.
Otherwise Mark's feet and hands are doing better on the lower dose of Nexovar. He has this weird foot nerve pain but its way better than the sores. They have him taking all the pills in the morning which is making the fatigue you get from these pills more intense, for example, he fell asleep in the Vons parking lot yesterday. Clearly he is tired.

Otherwise, we are doing good. ...and the beat goes on and on.