91 Days

Here I am two weeks later.  Tic toc, tic toc.  When I last posted I was anticipating starting chemo therapy to lower my antibodies.   Doing so would allow me to accept a greater percentage of donor hearts.  I currently cannot because of the presence of antibodies.   The way the process would work is that I would have plasmapheresis to clean my blood.  Suck it out of one arm, run it through the dishwasher and pump it back in the other.  This would have taken all the antibodies out of my blood, leaving me immunosuppressed.   Then the chemo would be given to bond to the hemoglobin preventing the antibodies from reforming.  However, as this process is fluid, ever changing, my doctors are constantly updating the approach to ensure I have the best outcome.  So right now we are not doing chemo, we are going to stay the course and wait. 

What that means today is that because I have a driveline infection, immunosuppressing me could cause the infection to attack my body with no defenses, which could cause a lethal outcome.  The good news to this is that while I wait more now, my doctors have done very aggressive research to see exactly what bugs are toxic to me and will ensure I don't get a donor heart that is toxic to me.  This is a good thing.  So here I remain on Cipro, as a status 1A transplant patient, the most urgent category.  The average wait is 90-100 days and as I have been 1A for 91 days now, I am hopeful the call is imminent.

The hard part in this process is the waiting, and the changing of the plans.  Each of the decisions I have been asked to make (stop working out, admit yourself to the hospital to wait long term, do chemo, have a heart transplant etc.) is a major major decision.  I have had to make all of those decisions in the last 2 months.  The good news is that I have complete faith in my doctors that they are doing absolutely everything they can to ensure I have the best possible outcome, and live 40 years:-)  That makes all of this tolerable to some extent.  However, I do feel like I have been treading water for 3 months now.

After I had my last clinic appointment I was driving back to work and as I crossed the 35W bridge that collapsed 6 years ago I saw a bald eagle flying right over the front of my car.  I feel like that eagle is a sign to me that freedom is on the other side of this surgery.  I look for that eagle every day.......