Princess Buzz Kill
Hi everyone!
We're calling today the first day of the upswing. Mama had a very rough week, but mostly with expected symptoms. She had a couple of complications which are within the bounds of what they're used to dealing with on the transplant floor, and which have mostly been resolved.
She's had a lot of nausea and a persistent, intense headache, and it was a complicated balancing act of medications for five or six days. She was unable to eat or even keep water down for five days, and the pain meds can cause nausea but some of the nausea meds cause headaches and all of the meds make her loopy and exhausted....
But she's starting to feel better: She ate four crackers last night and a whole serving of pears for breakfast! She also has started walking again- a mile a day for the last two days.
She had/has a blood clot in her right arm that was causing swelling and pain (this is a common complication of the CVC port she receives medication through). Getting that diagnosis was awful, not because the clot is especially dangerous, but because she had to leave the floor for several hours to get an ultrasound on one of her hardest days.
However, once they'd confirmed the clot's location they gave her a few days of blood thinners, and it started to break up on its own. That process is still happening, but without the push from the meds because her platelet count is very low (as it should be right now!) and it should continue to dissolve on its own.
The other main struggle has been with her anti-rejection drug (Tacrolimus).
Even though Amy's cells are a perfect match, a donor transplant always requires immunosuppressant/anti-rejection drugs. Patients are usually on a 24-hour drip while in the hospital and transition to an oral form before going home. The dose is not fixed because people process it differently, and the important number is how concentrated it is in your blood, not how much they're giving you.
It turns out that she is highly, highly sensitive to it, because they started her on a normal dose and her blood had four times the concentration they were looking for. For over a week they've had to keep halting it for hours to let the levels fall and then re-starting at a lower rate, but only today have we finally (hopefully) found the balance point.
They had to turn it down gradually because while the overdose side effects are awful, the risks of under-dosing are very, very serious- this is the drug that is protecting her from graft vs host. She's now on the lowest rate they're able to give of this drug (I think 1/7 of the original). Her doctor had started to talk about switching to a different type of anti-rejection medication, but it looks like this is going to work.
The Tacro overdose was a major cause of her horrible headaches, and she's finally able to be comfortable without regular hits of opiates. The concentration in her blood was right at the last test; they'll keep checking over the next few days to be sure it stays there.
Dan was here for the 4th of July, and started calling me the Kiss Police, because I'm maybe a little bit (appropriately!!) vigilant about sanitation right now (I feel totally justified in this, to be honest.) I have decreed that she is like a queen who may receive tribute and adulation - kisses on the hands or top of the head - but shan't condescend to sully her own lips. And also that she should wash her hands after you kiss them.
I am Princess Buzzkill.
The other Fourth of July excitement was that the hospital was holding a blood drive and Dan had to come fetch me when I passed out after donating. I hit my head a bit on the way down, but was totally fine after I spent the rest of the day drinking juice and napping/trying to get warm. My poor mama was feeling wretched herself that day and we pretty much just lay in adjacent beds trying to fuss over each other without sitting up.
I have been informed by a friend that perhaps I ought to "just keep my blood for myself," and by Amy that she, grandma, and mom all have low blood pressure and can't really donate, and I might be in the same position. I was definitely feeling anxious about it when they took my blood pressure during the screening, and I think I may have accidentally made myself look like a better candidate than I was by being stressed out. All better now!
Mom is sleeping right now because she was awake a lot of the night due to bone pain. This is good news! Bone pain means that Amy's cells have settled right in and are churning out new blood cells. We are perfectly on schedule- one pretty okay week and one really garbage week down, and headed into the third rebuilding week preparing to leave the hospital around the 15th.
In the last couple days, she's had enough awake-and-not-in-pain time that we've been watching Shakira music videos, listening to Joni Mitchell, and starting a new season of the Great British Bake Off.
We (mostly Linda) have made friends on the floor, and are invited to spend this evening having a Shabbat dinner with our Costa Rican friend Fela (who's about my age and had her transplant the same day as Mom) and her family.
We do have a lot to celebrate.
Love you all,
Bekah
