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.......

77 Days and counting

The wait definitely takes on its own life.  Sort of like I virus that grows out of control.  My math says that I have between 77-80days of 1A time now.  I had 30 days of 1A last summer from July 1-Aug 1, and have been on 1A since September 27 as a result of my driveline infection and antibiotics.  I also think I had 3 days of 1A when I was first hospitalized.  Right now my restrictions are no running, swimming, showering, working out, less than 2mg salt per day, no drinking, traveling.  So.....I pretty much can't do anything.  I am hopeful right now that this will change at some point in the very future.  90 days is the magic number, I have been told that is the average wait time on 1A.  I am expecting to be told in clinic on Wednesday that I need to start chemo to lower my antibody profile.  I have high antibodies and consequently I can accept a dramatically smaller population of hearts.  Lowering my antibodies would have the opposite effect in that I could accept a much greater percentage of hearts.  More potential donor hearts means less wait time.  Once chemo starts I have more restrictions, if possible.  The doc's are quick to remind me that while the chemo is relatively light it is not anything that is ever really considered good.  So I am expecting to feel pretty crummy.

I am so thankful for my Thoratec Heartmate II, but I am SO ready done with this device.  I feel like every aspect of my life is on hold.  I need more Caribou coffee and to see my Eagle every day, reminding me that I can fly again after this is done.

No, I don't do heroin

I just returned home from a 4 day, 3 night stay in the hospital to have my driveline infection surgically removed.  I was admitted on Tuesday at 8 AM and waited for 8 hours in in pre-op cooking under a surgical gown with a hair dryer hooked up to, frying me.  Finally at 4 PM my surgeon, Dr. Sun came in to rescue me.  After 40 minutes of dreaming  I was in recovery.  I have been visited by the vampire 19 times this week, my arms are riddled with holes and bruises.  IV drugs are definitely not my poison.  Literally every 3-4 hours for 4 days, day and night.

The doctors have said that the average wait time on 1A for a heart transplant candidate, blood type O, is about 90-100 days.  I have 70 days as of today.  So I was told to be prepared for the call inside the next month.  I met with three other patients waiting for hearts while I was there.  People would cringe if they heard the jokes being made behind closed doors about Halloween accidents etc.  I guess it is part of the process.  I feel very strongly that things are aligning, like the eye of a storm, rotating around my universe getting me ready.

I survived on Caribou coffee, Metallica music, and the site of a bald eagle that I saw every day from the view in my room.  It makes me smile and think about the freedom of being on the other side of this and gives me strength to spread my wings and soar higher.