I went back to NIH at the end of February to repeat the bone marrow biopsy that was “goofed up” last time. It was a good trip.
I flew out early Wednesday morning, had dinner with a friend, then had appointments all day Thursday then had dinner with another friend that evening, then had a few more appointments on Friday, then met with a couple more friends, had the evening off, then flew back home on Saturday. I’ve managed to accumulate a group of people I must see every time I’m out there so it makes the trips even more worth it. You know, on top of being able to see some of the best doctors in the world (not only by my standards but of the medical community as well).
While there my appointments consisted of seeing my transplant doctors, the dentist (it’s confirmed that my salivary glands still aren’t working well), the ophthalmologist (they said nothing was wrong with my eyes, I beg to differ but they said I’m just getting old) and my gynecologist. I also got a chance to chat with Jennifer (my social worker), Nicole (the research assistant that did all of my egg harvesting coordination), Cindy (one of my Nurse Case Managers), a GATA2 patient that I met last year who was 22 days post-transplant and then I was introduced to another GATA2 patient who was just a couple days from transplant. It has been so wonderful to meet other people like me and to relive my experience and to be able to give someone going through this an additional perspective. I wish I had that when I first started the whole process.
I got the preliminary results from Dr. Hickstein about 4 days later. He let me know that my CD3 chimerisms had increased from 56% to 65%. Remember how I’ve talked about my CD3 chimerism and how it was really lagging in respect to all my other chimerisms (chimerisms are the test to see how much of my cells are Shaun’s vs. mine)? Because they were lagging it was glad to hear that they are finally catching up.
About 3 weeks later, I received the best news of all. “Cytogenetics normal!”
It was in the cytogenetic testing that they identified the abnormalities of my bone marrow so checking this periodically is one of the best ways for the doctors to determine if the transplant worked and of there is anything to be concerned about.
A month after NIH, I went back to Stanford for more blood tests. They tested the chimerisms yet again and BOOM! It’s up to 75% now. Take a look!
I head back to NIH in about a week to do my one year follow up. Holy. Shit. Right?!? It’s almost been one year. Unbelievable.
This visit they’ll do: blood work, a urine analysis, a DEXA scan (I honestly don’t know what this is quite yet as I’ve never had it done), a echocardiogram, a pulmonary function test, an MRI and a bone marrow biopsy. I’m also scheduled to see Dr. Hickstein, Dr. Parta, Dr. Holland, the dermatologist, dentist, ophthalmologist and gynecologist. And my dad will be there, too! It was just about time for him to go back for his yearly visit, so we scheduled our visits together. More to come soon!