Some quick updates: Friday they requested samples from the 4 potential donors (the three 6/6 matches and the 9/10 match) to be sent to the lab here in Seattle. It takes about a week to hear back, so the next news we’ll hear is whether the donors are in fact findable and a scheduled draw date, or if they’re not available. I asked and they won’t tell me who or where the donors live (or vice versa). I can only know after the transplant. It's probably a good thing, since I expect my donor to be some strapping young 24-year-old marathon runner :).
Also, I have a better idea of the events leading up to the transplant after talking to a registered nurse at Regence BlueShield who deals specifically with people getting transplants (I didn’t even know they had people in that role at an insurance company). So she’ll sort of be my advisor throughout the transplant process. Have you heard of anything like that from an insurance company?
So here’s what things look like from here on out:
1) Wait for donor
This is where we are now. From what I understand a transplant date could be set in as little as 1-2 months depending on whether the donors are eligible.
2) Final evaluation (2 weeks of testing)
We’ll receive word that a transplant date is set, and something called a “final evaluation” will be run to decide how best to wipe out the existing marrow. This is the part where they figure out how my body reacts to various treatments so that they know which treatment will have the best chance of wiping out all the marrow and blood stem cells leading up to the transplant. The final evaluation is said to take 2 straight weeks of testing 8 hrs/day. I can go home at night. So from what I understand, during these 2 weeks they’ll be running all kinds of tests to figure out whether to use chemotherapy or irradiation, or some combination of both and in what dosages to figure out how they’ll prepare my body for the transplant. The woman said they run a lot of tests, probably to see how my entire body reacts to everything. I can only imagine :)
3) Transplant preparation (intense chemotherapy/irradiation for 3-4 days)
This will consist of the chemotherapy or irradiation (or both) for 3-4 days before the transplant, in which I’ll be in the hospital. They say it could be a few days longer depending on the results they get during the final evaluation. This is the part where they fully wipe out all the marrow and blood stem cells, leaving 0% left. Whether it’s chemo or irradiation or both, in any cases these are lethal amounts. This is the “in limbo” stage where a donor that chooses to back out (hopefully not) would be life-threatening. I think I lose my hair finally during this part. Though I heard that sometimes your hair grows back differently or can even grow back fuller than it was before. Wouldn't that be weird if I ended up with a full head of curly hair afterwards?
4) Transplant preparation (rest up for 2 days)
Finally, there are 2 days of rest to give the body time to recover after all the treatment and to ensure they successfully wiped everything out, before the new stem cells are grafted.
5) Transplant (2 hours)
The transplant itself is actually the simplest part, and consists of hooking me up to an IV drip with a bag of blood stem cells. It takes about 2 hours to infuse the stem cells. This is called “day 0” in my new life :) The stem cells are smart enough to know how to travel through the bloodstream and find their way back into the bone marrow, so that they can start making new stem cells and blood cells. Pretty amazing stuff.
6) Post-transplant (3 weeks in-hospital)
There will be 3 weeks or more hospitalized stay after the transplant. Essentially I’ll be isolated in a special transplant ward where I’m on a different ventilator system and guests are required to wear masks and gloves, etc. No one with runny noses, sore throats, kids are allowed. Apparently an alarm goes off if the door to the room is open for longer than 30 seconds. During this time I’ll be getting blood draws continuously and will be getting regular transfusions since it takes a while for the new stem cells to start producing adequate amount of blood cells on their own. They expect transplant patients receive about 120 units of blood during their stay. For comparison I received 4 units during my last transfusion.
7) Post-transplant (1-2 months at home)
After the 3 or so weeks in the hospital, I can return home but will be returning to the hospital for about 2 hrs/day for blood work every day to administer more transfusions if needed. There is a whole list of rules I’m subject to during this period, like bleaching all countertops and surfaces, being on a specific diet, no restaurants or grocery stores, etc.
8) Transplant complete!
They warn me that it can take a year after the transplant itself to make a full recovery, but given my age I’m sure I can be back to normal sooner than that.