More bad news – my brother is not a half match either. There’s a 1:2 chance that he would be a half match and apparently one of us was switched at birth because he doesn’t match. Mom is completely dumbfounded because we looked so much alike at birth and as little kids (we really did) so how can he not match me at all?
The doctors gave me a very small glimmer of hope by asking to type my cousins as there’s a 1:8 chance one of them could be a donor match. I have four cousins so let’s see what happens. My insurance will not pay to type my cousins so that cost will be an out of pocket expense to me at $435 per cousin. Next, my insurance will also not pay to do a search in the National bone marrow registry and that expense will cost me $10,000. You read that right - $10K. At first I was floored by the cost to do a search in a database – how can it be that expensive? After thinking about it and talking to a few people, I’ve come to realize that cost must include searching for a donor match, carefully screening the person (full health workup), and then prepping them for the donor process (which includes Neupogen shots to maximize their stem cells to help me on the other end). That makes me feel better, but $10K is a lot of money. We’ll find the money somehow (now up to $12K if you included the cost to type my cousins), but how do people do it and why doesn’t insurance cover the cost? They’ll cover the transplant, but not the search process and the search is part of the transplant. Without the search, there is no transplant. It boggles my mind.
On top of all this, NIH did a preliminary search (which is free) and found no 10/10, or “perfect” match for me but did find 50 9/10 matches. I’m trying to be positive that 50 9/10 matches are better than no match at all, but I’m floored that there aren’t more out of the hundred thousand people in the database. I really don’t need to be that special and I want to find that perfect match who will help me live.
I’m having a really tough time this week dealing with this news plus the doctor in Texas started rattling off mortality rates and statistics with a half match versus a 9/10 match. I know the prognosis for MDS is not that great, but I didn’t need to hear it on the phone at work. I’ve decided I need another doctor with better bedside manners and one who will tell me that I have a tough road ahead and it’s not going to be easy, but he or she will help me FIGHT. I don’t need some research doctor to give me the stats and make me feel like I’m up against the impossible before I even start this journey. I've asked my doctor here for recommendations and then I'll call the advocacy center to see if they can give me someone else. I just can't deal with a bad doctor too.
I'm also trying to figure out whether I need to fly back to Texas to meet with their lymphoma doctor. I am scheduled to go back on Monday, but I'm trying to determine if I really need to go or can we work it over the phone with my local doctors. If the lymphoma is back, then maybe we can work the treatment locally? I just pray that the lymphoma is not back - one problem at a time.