Rainbows, Butterflies and the Real Life of Heart Transplant

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…

Tomorrow I will be on my way to Los Angeles for a preliminary evaluation at Cedars-Sinai hospital. Everything about this is stressful. The process to schedule this began on Friday, but due to trying to confirm logistics and their office closing early on Fridays, the confirmation was actually this week.  As I have said in previous posts, there are timelines on how long Milrinone will keep me alive and paired with an abundance of people on the transplant waiting list, the faster all this goes the better. However, every call and move closer to moving, waiting, going through yet another transplant,…

Since my last post, I have been making regular trips to Orlando for photopheresis. Last week this provided an extra hiccup for me when my air conditioner went out on my car, just in time for the warmest days we've experienced recently. I was able to figure out that large leak in the condenser was the culprit, so between anxiety surrounding money and bills, and the will to have as many accomplishments as I possibly can, I  was determined to fix it myself. I am proud to say that as of now, after fighting some poorly maintained rented equipment and…

This week has been very enjoyable away from the hospital. There was an evening where we took some risks at trivia, won big at having a good time, but not as big in the points department. I've spent time with Ashley at home, we took dogs to "the swamp" (a trail near our house), and I've enjoyed doing some every day "boring" tasks around the house. Tomorrow morning at 7:30 I have my first outpatient treatment of photopheresis. The biggest challenge for me will begin at around 5:00 when I have to get out of bed, look at my phone…

I was released from the hospital yesterday around 5:30 pm. On more than one occasion I accidentally made reference to the stay as jail or an aspect related to jail. So I guess this could be counted as compassionate release. Most people that would see me think I am being released from the hospital because I am better, but the story couldn't be further from the truth. For better or worse it's "you may not have a lot of time, enjoy what you have". As mentioned before one of the drugs keeping me alive is a Milrinone IV. The negative…

Friday I started a treatment that my current transplant team, also consulting with the other potential heart transplant teams in Los Angeles, believe that will lower the non-HLA antibodies returning. This will help any further rejection of this heart and put me in a better position to be a better candidate for a successful heart retransplantation. The treatment is called Extra Corporeal Photopheresis, (Photopheresis or ECP for short). The procedure is done by pulling blood through a machine that separates out the blood. The white blood cells get treated with a drug, Methoxsalen, that make them more reactive to ultraviolet…

We have lost count of how many plans we have made and canceled since I've been diagnosed with my heart condition in 2015. Every time it leaves a little scar with me of another opportunity missed in a short life, even for an average healthy person, let alone someone with a terminal illness. Today is one of those opportunities missed. We should be running in the Snickers Marathon & Half Marathon It hurts even more because it was Ashley's wish to do it for a birthday trip. I can deal more with having to cancel something that I wanted to…