Date: 10.26.18
Time: 3:33pm
Fun fact: Every time they draw blood, they do a "cross and type" test that tests your blood type because my blood type will be changing. My doctor confirmed that my blood type will change from A+ female to B- male (meaning that my donor was a B- Male). Crazy, huh? This works because HLA typing doesn't have to do with blood type, it has to do with tissue typing. This means that I will become a Chimera.
"Chimerism is a condition whereby a person has not one but two complete genomes (sets of DNA) in their body. One genome is found in one region or organ(s), while the other genome can be predominant in other organs or tissues."
My blood will look like it belongs to a B- male, but any other DNA (hair, saliva, skin cells) will be me. If I were a criminal mastermind, this would be ideal, but I'm not, so it just seems kinda weird and gross.
"Some risks are common like temporary hair loss and infections. Others are much less common, like your body rejecting the new cells and possibly death. Some risks are only with certain types of transplant. For example, graft-versus-host disease (GVHD) is only a risk after an allogeneic transplant (cells from someone else).
The risk for complications is highest during the first 100 days after a transplant. This is because your immune system is new and needs time to grow stronger. But there can still be risks during your recovery months and years after transplant. "
The risk for complications is highest during the first 100 days after a transplant. This is because your immune system is new and needs time to grow stronger. But there can still be risks during your recovery months and years after transplant. "
One academic paper that I read said that over 50% of patients are readmitted to the hospital in the first 100 days following transplant. I plan to avoid this by adhering to the post-transplant restrictions. Some of my restrictions that will last until Day +100 or beyond:
- cannot go into public places without a mask
- must stay out of the sun between 10am and 4pm
- must wear long sleeves/hat anytime that I am in the sun
- must wear SPF 30 sunblock if going to be exposed to sun
- bed linens must be changed once per week
- towels must be washed at least twice per week
- must change to a new toothbrush every two weeks
- no gardening, digging in dirt, or touching soil or plants of any kind
- no dusting, vacuuming, cleaning bathrooms
- can pet cats, but must wash hands immediately after
- cats are not allowed to sleep on bed/in bedroom
- no cleaning litter boxes
- no drinking well water; can drink bottled or tap water only
- no eating food prepared by someone else, unless reheated to at least 165 degrees
- no raw or under-cooked meat, cheeses, eggs or unpasteurized dairy products
- leftovers must be eaten within 48 hours or disposed of
- no driving
- I still have my PICC line, so no lifting above 20lbs
- I must cover my PICC when I shower with a glove from hand to armpit
- avoid crowds; no going to public places when they are busy
- cannot be around anyone sick, or anyone that has been exposed to anyone that is sick
- cannot be around anyone that has received a live vaccine within 4-6 weeks
In addition, I still take my trail mix of medications several times each day. My immune system is being suppressed (by Tacrolimus), so that my new immune system (the cells that they infused me with) can grow without the two going to war. That means that I am extremely susceptible to any kind of infection - things that your body would normally be able to fight off could attack my body since I have little defense. To try to keep that from happening I am on several medications that prevent infection. Daily, I take Noxafil (an anti-fungal), Acyclovir (an anti-viral), Atovaqone (anti-fungal), and am supposed to get IVIG (anti-viral) infusions weekly to prevent infections. Additionally, I am on a blood pressure medication (the Tacrolimus raises my blood pressure), magnesium (Tacrolimus eats the magnesium in my body), a liver protectant (Ursodial), an acid reducer (Tacrolimus can also cause heartburn), Prednisone (steriod), Compazine (anti-nausea), and my sleep aid - which I have started again, since I think that the Tacrolimus is the culprit behind my headaches - Trazadone. Tacrolimus sounds like a nightmare doesn't it? Well, since it is the medication that is preventing rejection of my new cells, and working to prevent GVHD, it is a necessary evil right now. I will most likely be on all or most of these medications for at least six months.
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| Gettting IVIG 10.18.18 |
Since I've been home, I've found that I can't really predict how I'm going to feel. I've had headaches when I didn't expect to, been so tired that I've slept until 1:30pm in the afternoon, wanted to go take a walk, but didn't have the energy, and been unable to sleep in the middle of the night, even though I thought that my sleep issues were starting to resolve. Every day is a new one, and I kinda just have to take it as it comes and not try to make any plans to be productive, since I never know how I am going to feel - if I'm going to have a debilitating headache, or need to sleep half of the day, which is frustrating, but I'm trying to give myself time and grace to heal.
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