Monthly Archives: April 2019

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…

Ashley here – Long time brokenbeatblog reader, first time guest poster. So Brandon can’t swim because he can’t get the IV pump or the line that runs into his chest below his right collarbone wet, and he can’t run because his heart function is still crappy. But today he did strap on his sweet pump-containing fanny pack and hit the road for a 14 mile bike ride. It was sunny and beautiful and perfect. And we saw a snake. So a good day for all.  I think Brandon does a good job on this blog of sharing the severity of…

Friday afternoon I received the call from Cedars-Sinai Hospital. As the title of this blog states, they did reject me, but it's for a big reason that is better than I was hoping. The team has reasons to believe at this point that my heart is still recovering. So as of now, they are working with my transplant team here, in Florida, on further testing. Right now they are ordering a cardiac MRI. This will show how much fibrosis, or scarring, is present on the heart. Hopefully, the rejection has not left too much scar tissue, we will pursue recovery…

The Friday before last I had my evaluation performed at Cedars-Sinai in Los Angeles. As of right now, we don't have an answer or plan. Their selection committee meets on Fridays, and there was an international transplant conference in Orlando, this past Friday. So my case moved up a week, and they will decide this coming Friday. My exposure to their program is obviously limited. However, my experience at the hospital indicated that they are organized, thorough and knowledgeable. One unexpected thing that was mentioned by the doctor was that there is a small chance that I will be able…