Rainbows, Butterflies and the Real Life of Heart Transplant

This week I am preparing to make my way back to Florida. My last appointment that I’m required to be here for is scheduled for tomorrow (Wednesday September 23rd). I have had the plan made for a couple of months that I would drive home, avoiding being cooped up in an airplane with potential carriers of COVID-19. After discussing plans with my doctors for returning for future check-ups it occurred to me that I could wear an N95 mask, with a surgical mask over it, which was an idea given to me by some people at Cedars. Over the past…

Last weekend I ended up in the emergency room. Saturday I started to get a headache but it wasn't out of the ordinary, I have a history of migraines as a side effect of Tacrolimus (one of my anti-rejection medications). Headaches are one of the most common side-effects and according to one neurologist I spoke with could be in the 60% range if people who take the drug. Since 2017 I have been receiving Botox for this reason and have been maintaining the headaches well. When I woke up Sunday morning, the headache had intensified, but still wasn't the worst…

There are a lot better posts that I would like to be making, but this is the reality. I am writing this from the hospital. At this point it seems to be only for an infection, parainfluenza type 3, which contrary to its name is not influenza, but basically a cold. In some cases, especially people with suppressed immune systems this virus leads to pneumonia, which I developed in my right lung. Friday's sunrise from my hospital window In hindsight, my first symptoms were probably middle to late last week. Whenever anything is starting to go wrong with my health…

Today is May 7th. A day that would not stand out for most people, including me if it wasn't for Facebook's memories feature reminding me of the posts informing the world that today, four years ago, my life would forever change in a way that no one should ever have to go through. I would never wish this life on my worst enemy, but it is the life that I have now. And as anyone would do, I make the best of what I have left. If even one other individual can be inspired to go to the doctor, be…

Happy Monday! So far no help from either Cedars or Advent Health. Brandon's still dealing with the side effects of months of high-dose prednisone and walking around with his IV pump. His potassium was abnormal from all the diuretics so they backed off those last week and so far he's tolerating the change without any fluid build-up. So there's that. GTM Reserve with these dudes This replica of the Santa Maria is available to tour in St Augustine through May 5th. In good news we had a lovely weekend together. I had to take a few days off for my…

Thanks to my incredibly talented, beautiful wife, we have a new logo! We have been discussing ideas for a while now, and she hand drew this bad boy! With a little computerization, we got it to where it is now. Thank you Ashley!

Change seems to be the theme this week, and for the most part, that is a good thing. The biggest news is that, for multiple reasons, I will be changing to a different primary transplant cardiologist within the same team in Florida. My current primary cardiologist is leaving later this year, and if I had known that, for sure, before approaching him with my concerns, I might have slept a little easier leading up to that conversation. Either way, I needed to express my concerns, and I am switching sooner rather than later. The main concern from my perspective as…

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. Evel Brandnievel 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…