I haven't (yet) needed transfusions, as my counts, though I'm technically in nadir, have held okay:
White blood cells: 1.8 Thursday, 2.4 today
Absolute neutrophils: 0.97, 1.3 (able to grocery shop again)
Hemoglobin: 11.4 (wow-that's "normal"), 10.7
Platelets: 50K, 33K (trending downward)
It's interesting that some of the counts are going up, while others down during this period of nadir.
I saw the dentist to prepare for transplant and (unfortunately) I have two cavities that need to be repaired beforehand. I guess you're very limited in dental work (unless an emergency) for a year after a transplant, due to the increased chance of infection. Here's hoping my counts go up before my appointment on April 3rd!
I have started reading more about life after transplant, as it will probably happen in 5-7 weeks from now. The exact timing depends on the donor's availability as well as room in the transplant unit at Froedtert. I'm also trying not to be freaked out by much of it. There's lots on Graft vs. Host Disease (GVHD), which is pretty inevitable--and can range from mild to fatal. If you don't want to read the whole link, here's some highlights:
- The donated stem cells also include T-cells from the donor. T-cells are a type of white blood cell that target things that can make you sick.
- Getting T-cells from a donor provide a benefit in that the donor's T-cells should recognize any remaining cancer cells as foreign, and target them.
- But a donor's T-cells may also target the host's "normal" cells, which can cause issues ranging from a skin rash to GI upset, vision problems, and even death.
Acute GVHD occurs within the first 100 days after transplant, so this is a particularly vulnerable period. I will be monitored very closely during that time. (Depending on when the transplant actually occurs, that will be until sometime in August, I believe... Missing pretty much all the summer, since among other things, I can't be in the sun while on the anti-GVHD meds.) I will likely need numerous transfusions. I'll be bugging everyone to donate blood, and my colleagues at the North Shore Health Department set up a blood drive for Friday, June 5 from 10-3 in Brown Deer. To sign up as a donor please contact Kala at khardy@nshealthdept.org or 414-371-2985.
I asked about things I can do to prepare for the hospitalization and coming home after. I ordered prescription sunglasses and think I might get a few pairs of sun sleeves, so I can still wear short sleeves and shorts when I get home, but can cover my exposed skin when I go outside. I also learned that when you're in the hospital, they want to minimize disconnecting the IV, so you either have to wear hospital gowns or have shirts that come undone at the sleeve. The nurse mentioned that you can order shirts like that on Etsy, but I think I can make some of my own, using snap tape and the millions of t-shirts that I never wear (of course we just brought a bunch to Goodwill yesterday). Something else to work on while I'm stuck home.
Perhaps the scariest thing that I learned is about vaccines. Because my immune system will be completely knocked out by the transplant, I will essentially be like a newborn baby in terms of immunity--but without the passive immunity provided by breastmilk! I will need to get all my immunizations over again--and I cannot even begin to get until SIX MONTHS after the transplant. Perhaps the most frightening is that I can't receive the two live virus vaccines (MMR & Varicella) for TWO YEARS after transplant. I can only rely on herd immunity--and with recent outbreaks of measles as near as the Twin Cities, that really scares me.
I could go on and on about the importance of vaccination (I am a public health professional, after all), and I will say that I was once a delayed vaccinator (before I went to grad school in immunology). However, once I learned about the very real threat to those who could not be vaccinated, weighed against the minuscule risk of vaccines, I realized that it was unfair to put others at risk.
Additionally, one of the most interesting, compelling, and recent discoveries is that the MMR vaccine is more beneficial to the immune system than getting measles. This is because measles infection actually erases immunological memory, making a person more vulnerable to diseases they'd previously been immune to.
And so I will be asking friends to stay away if they and/or their children are not vaccinated. If I make it through all this chemo and a transplant, I'm not going to risk my life to a vaccine preventable disease. That risk is just too great.
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