When I first heard that I might need a transplant, I was in disbelief. It was a trip-the-light-fantastic thought… in my mind other people, sick people, dying people got transplants, not me. I pushed transplant out of my mind and continued on with life. I don’t even remember when or where I was, when I was told that a heart transplant was the likely course of action but it was a couple of years prior to getting on the list.
I do recall a milestone in my journey that caused me a few tearful and at times sobbing moments, and that is when I found out that I needed a pacemaker. I could put a number on my heart functioning and it wasn’t good. The pacemaker meant that my Ejection Fraction was at or below 35%. I had never slipped below 40% before and it was an eye opening moment. I couldn’t escape getting a pacemaker, it was a surgery and a tangible event that would not be ignored. Denial time was over, I was getting closer to death.
How close to death, I don’t know, but I did know that I was tired, I felt like I was walking through mud. During this time, I was working full-time and I took a medical leave to have the pacemaker surgery. The recovery from pacemaker surgery does not require the 12 weeks that FMLA offers you, rather it was more about my anxiety and getting my feet under me-letting the idea of a transplant sink in.
It was 2009, I was 33 years old and my heart was failing me, it was time to take stock. How was I going to live? Was I going back to work? I recall telling my boss that “my head wasn’t in the game” and I couldn’t concentrate on work, at the time I was providing outpatient counseling to children and adolescents. They needed me present and emotionally available and I was just simply none of those things.
I eventually went back to work in the fall of 2009. I was able to stay working until January of 2013. Working became increasingly difficult, as I was so tired. I took every ADA accommodation I could to make my job sedentary, but it just wasn’t enough. On a few occasions, between clients I would turn off my office lights and take a nap on the floor, under my desk. The light from my computer screen would annoy me, but when I turned it off I was in total darkness because I didn’t have any windows.
My light was going out. My looks were deceiving, as you can see from this spring of 2009 picture of me feeding the ducks. From the outside, I appeared healthy but on the inside my heart was failing. I struggled with a hidden disability for years and I still do as a heart transplant recipient.
I had to stop working in 2013. By 2015, I was in trouble. I was having shortness of breath and using an electric shopping cart on the rare occasion I could muster the energy for a trip to the store. By the fall of 2015, I was being pushed in a wheelchair for most outings outside the house because I lacked the life force energy to walk. My light went out slowly, over the course of months and prior to that a few years.
For a long time all I could do was go to work. I never went out on “school nights,” because I needed all of my energy to go to work. I didn’t run by the grocery store after work, because that to required too much energy. I would take naps, sleep and rest and still wasn’t enough to wake me up. Congestive Heart Failure was knocking on my door.
It would be a long, arduous path to a heart transplant and I was on my way.
Eventually I would be hospitalized many times between 2011 and 2015 for fluid overload, a symptom of heart failure. By the time I was told I needed a heart transplant I was ready or at least I was not terrified of the idea of transplant. Transplant is a journey, despite what you see on TV it does not happen overnight.