Starting tomorrow it’s back to the grindstone of medical mayhem. Brandon has to drive four hours roundtrip to Orlando both Monday and Tuesday for his 2-hour photophoresis treatments and a meeting with one of his plethora of doctors. But this weekend we got to spend some voluntary time in Orlando, which was a nice change.
We spent last night at Gilt nightclub (
http://giltnightclub.com/ ) dancing to DJ Malaa. This (late) morning we did a Waffle House-fueled 15 miles on the Seminole-Wekiva trail, enjoying shade, a cool breeze, and some sweet trail art (
https://www.floridarambler.com/florida-bike-hike-trails/seminole-wekiva-trail/ ). Brandon did an excellent impression of Evel Knievel on his eco-friendly hog. And I got to spend some quality time with my favorite water-dwelling mammal, the manatee (
https://www.savethemanatee.org/manatees/facts/ ) .
Brandon has to plan above and beyond when he travels. Back when he had his LVAD (heart pump) he had to bring batteries, back up pump, cleaning supplies, etc. Now, with the heart transplant and continuous IV pump, he has to bring, you guessed it – batteries, back up pump, cleaning supplies, etc. The medication also has to be refrigerated until it is used, which means the IV fluids have to be packed in a cooler with an ice pack for travel. He has to be cautious in crowded spaces like nightclubs to protect his IV line (a pull could mean removal of the line and another minor surgery to replace it with a new one).
Another little difficulty is that transplant patients are severely immune compromised for THE REST OF THEIR LIFE, which means that catching a cold or the flu in a crowded space is a truly life-threatening situation. That means that it’s a calculated risk every time Brandon goes to the grocery store or to get his blood drawn. So we’re super grateful to every one of you that has helped protect the 36,000 patients that survived transplant surgery in the United States last year alone. By getting your flu vaccine, covering your cough with a mask in crowded places, washing your hands after touching your nose or mouth when you are sick, and staying home if you can’t do those things until you are feeling better, you are literally saving lives! Go you! Treat yourself to a cookie. Or a Cadbury Cream Egg. Happy Easter!
Happy that you had a good weekend.