Blog

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, my anxiety rises. There is a constant battle in my mind over relief that the next step towards a potential better, longer solution is closer. However, every worry and challenge is closer. If everything goes well with this evaluation, for multiple reasons, Ashley will be staying in Florida when I have to live in California. Every step is also closer towards the bad sides of going through another major surgery and the major risks. This will be the 4th center that I have gone through the listing process for transplant, and being honest, it doesn’t get easier any time. Friday will be a full day of meeting with Social Workers, Nutritionists, Doctors, Financial Analysts, Coordinators etc. on top of physical tests to determine my wellness and feasibility.

Sadly there are just too many things to worry about, so the way we have been trying to counter all of this is to keep busy with positive experiences. Saturday we went to Matanzas National Monument south of St. Augustine. This was built by the Spanish to protect the south entrance into St Augustine, which is at the Matanzas Inlet. It was a great afternoon learning even more about the rich history of this area. Saturday evening Ashley surprised me with a couples painting class at Painting with a Twist. The class was fun, but the painting will be great for when we have to live on the separate coasts since they are paintings are cool separately but are better together.

Monday and yesterday were both early mornings of waking up at 4:30 and driving to Orlando for the last weekly treatment of photopheresis. Now I will begin monthly treatments. Thankfully, Ashley happened to have yesterday off, so she made the trip way easier by driving on the way there and then by doing something fun afterward.

One of the things on our to-do list to visit was Kennedy Space Center, so we were able to strike that off our list. We learned a lot throughout the day. As with most things, there is always something to remind me about my illness; this time it came as a positive by one simple infographic tucked next to a model of one of Atlantis’ engines. In 2015 I had an LVAD (Left Ventricular Assist Device) placed initially to save my life, but also in a failed attempt to recover my heart. The graphic stated that  the technology from engines on the space shuttle have helped develop heart pumps and that was one more reason added onto why it is so important to keep things like the space program funded adequetly.

Everyone has benefited from technology developed by NASA, some of us more than others. Ironically this morning I fell upon a story explaining Why Growing Transplant Hearts in Space Makes Sense. It turns out that a firm in Indiana is looking into using zero gravity environments to solve some of the challenges to using stem cells to grow human hearts. The article goes on to show how various other advancements in space technology could make this possible within the next decade.