ATG is a treatment for Aplastic Anemia (which did not work for me at all), but a transplant is a cure. The AA will not come back after a bone marrow transplant. Also as a fun side note, a transplant can cure some autoimmune diseases as well. My doctors expect my transplant to cure my Celiac Disease. I am SO excited about this and will take a blood test and start eating gluten again at three months post-transplant.
I was diagnosed in June 2021 and was told right off the bat that I needed a transplant. My state does not have institutions that do allogeneic transplants, so my mom and I chose to get treatment at City of Hope in California. City of Hope has great ratings and has performed one of the highest number of transplants on AA patients (still low, like 17 or something because it’s so rare).
Fertility
A bone marrow transplant has consequences for fertility. This should have been one of the first things talked about after I was diagnosed, but no one mentioned it until a month before transplant when it was almost too late for me to take any measures to preserve my fertility or freeze eggs, which is a lot more difficult and expensive than preserving sperm. I did not end up freezing my eggs because it was all a rushed mess and it was not medically advisable for me to undergo the procedure with virtually no platelets or white blood cells. I did, however, get an injection of Lupron before my transplant which might somehow help preserve my fertility according to the oncologist/ gynecologist. Nothing would have been done to address the fertility issue if I had not repeatedly pushed for it. I still don’t know if I’ll be able to have biological children but I have heard of other AA patients who were able to conceive naturally after a transplant. I still had to sign a form saying that I understood that I would likely be sterile after the transplant.
I don’t understand how it works, but I will get two more shots of Lupron 3 months and 6 months after the first one. I also had the Mirena IUD when I got the transplant, which the doctors said might also help preserve my fertility.
The Donor
I was very lucky to have an unrelated donor who was a full match. All I know is that he was a 31-year-old male located in the U.S. at the time of donation. It goes without saying that I am incredibly grateful for him! The bone marrow I received was fresh (not frozen). They took an entire liter (2 pints) of bone marrow from the donor a few days before the transplant. That accounts for 3-5% of the average person’s total bone marrow (fun fact that I learned in a pre-transplant PowerPoint from the hospital).
The Transplant
The liter ended up being 3 bags of marrow that took almost 8 hours to infuse through my Hickman line. 8 hours is not typical for a transplant; many only take 1-3 hours. I had one weird reaction during it where I started shivering and shaking. They gave me more Benadryl and I slept for most of the day. Otherwise everything went well but I felt really heavy and fatigued.
I had been in the hospital for 5 days before transplant day, during which time I got chemo and one “shot” of total body irradiation (TBI). The chemo just went through the IV and the radiation involved me standing on a platform in front of a huge machine that did its thing for a total of 30 minutes (15 with me facing front and 15 facing back). This was a tiny fraction of the radiation that people who have cancer get. I got two more doses of chemo at 6 and 11 days after the transplant.
Hair Loss
Although I got less chemo than people who have cancer, my hair did fall out and I had to shave my head about two weeks after the transplant. It didn’t start falling out until about day 10. It was really hard. I cried while it was happening and after, but then it was fine. Almost every other patient also had a shaved head and there was really no other way around it. I considered doing the cold caps that supposedly freeze your follicles while you get the chemo, but I decided against it because it seemed like another discomfort on top of everything else. Plus I always wanted to rock a pixie cut. For now, I have a wig that is the ideal version of my old hair and makes me look amazing, I dare say. I was overwhelmed by the world of wigs and went with an expensive one ($200, which was the cheapest of the nice ones I’m pretty sure) from the salon place at the hospital. It’s a Jon Reneau synthetic wig with smart lace (this is key) that makes it look like my real hair and is nice and breathable.
Catheters
This is my unlucky experience with catheters, take from it what you can: First I got a PICC line in my right arm. I only had it for a few weeks before blood clots formed in the veins that it was accessing. My arm hurt a little bit when I lifted it a certain way. I thought it was nothing but mentioned it to my doctor anyway and she ordered an ultrasound that showed the clots. They removed that PICC line and put another one in my left arm. That one caused clots immediately and it was also removed. I had to deal with horrible IVs all the time for a month until I finally got an appointment to place a port in my right upper chest area. I like the port because it is really comfortable and you don’t have to do anything to maintain it like changing the dressing or flushing it every day. You can even shower and swim with it with no problem. Here’s the thing though (which I didn’t learn until right before my transplant): the port cannot be used for the bone marrow infusion. Theoretically, it can, but the line is smaller than a PICC or a Hickman so there’s a risk of it damaging the stem cells, which are larger than red blood cells. So I had to have a Hickman put in on the left side of my chest while the port remained on the right. The plan was to take out the Hickman before discharge and continue using the port for blood draws and transfusions, but it didn’t happen that way for unimportant reasons and I got it removed a month later. So for two months I had two central catheters, which was not fun but was fine.
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