Zayne’s big take away from her May 18, 2020 clinic appointment:
I can finally take a bath!
My Summary:
- ECG is improved
- Echo (ultrasound of heart) is unchanged
- Heart rate is still in the 130s
- Zayne lost 5 pounds in 4 days – I wish I could do that, but her weight is from excess fluids due to heart failure
- Lasix dose is getting cut by 50%
- Steroid dose will be cut in 1/2 by Wednesday
- Off of penicillin, then back on. Apparently, the pharmacist has some concerns about the amount of elapsed time since her eculizumab treatment. This one will be good to leave behind, because Zayne has a 3 hour No Food/Drink window. So, Zayne may get to stop taking penicillin, or may have to continue for a couple of more weeks.
- Thursday’s blood test for BNP (measures heart failure) and PRA (measures donor specific antibodies) will show if rejection is getting under control or not (we want lower numbers). PRA results will not be available until Friday.
- It is going to take Zayne a long time to recover – her heart is in bad shape, and she is still in severe heart failure.
Zayne is wearing her sun outfits to protect herself from the sun, while playing outside. She is trying to ride her new bike, but can’t do any hills right now. It is difficult to stay away from inclines, so I rode ahead, walked back down, and let her sit on the bike while I walked her bike up the incline.
