His answer was perfect, honest, and not much different from what I'd expected. He said it doesn't mean much. It's a "man-made" number. Honestly, it comes from the early days of bone marrow transplant, where 20-30% (I think those were the stats he quoted) of patients would die within the first 100 days. So, to make it past those first 100 days was a big deal. Now, although the mortality rate for BMT is not as low as those of us undergoing it would like to hear (and depends on many factors such as age, disease, donor, etc.), it is much improved. For patients who receive and auto transplant (meaning their own cells are used), the 100 days means they get transferred back to their hematologist and are no longer followed by a transplant team. For those of us with allo transplants (donor cells), it's more for insurance and administrative purposes.
What does it mean for me? Basically, it ain't over yet. And that's pretty much what I thought. I will continue to follow up with a transplant doctor in Virginia, going to the doctor every week or two. I'm still on an immunosuppressant and will have to eventually be tapered off of that. While I'm still immune compromised, I still need to avoid crowds, certain foods, and be generally cautious about germs. We still have to look for signs of infection. We will continue to watch for graft vs host, etc., etc. I still have to rest and allow my body to heal from this pretty major ordeal.
For now, things look really good. My overall blood is now 98% donor, while my T-cells are 91% donor (my bone marrow DNA is now officially male, in case you wondered). So, both improved after tapering the immunosuppressant. Still need to get it to 100%, but not too quickly or we increase the risk of graft vs host. I've only had one infection and it's been taken care of. I feel stronger than I did 3 months ago. My lung capacity decreased, which is to be expected after transplant. My lungs will continue to be monitored over several years. My MRI was clear, although the ENT recommended anther one in 3 months as there was swelling present (no surprise; Dr. El-Shami had told me I'd have them every 3 months for the first year anyway). I will have to start hormone replacement therapy in a few months, as I am now in early menopause (at 34? No thanks). But, things really are on track. We feel so blessed.
On a side note, my hair is just starting to come back, including my eyebrows and eyelashes. My 4-year old niece is fascinated by my baldness. So, when she saw me the other day with fuzz on my head, she happily said, "Tiny Hair!" Not a bad nickname. So, this is Tiny Hair, signing off for now. More updates later.
