I was at the hospital most of the day last Wednesday. Tests results were mixed again but overall stable from six months ago – which were stable from a year ago. So my doctor and I decided to wait another six months to test again instead of hospitalization. It’s been two and a half years since he first told me I needed to be evaluated for transplant. And I have been listed as a status 4 transplant patient for a year now. So if you’re reading this and thinking… “Will this transplant journey ever end?!” That is exactly what I am thinking. I had no idea this marathon would linger so long. (Just as a reminder, most people can expect to receive a heart offer as a status 4 patient but I will not because my antibodies are so high.)
I have mixed emotions. I am happy to have this heart for another six months and prolong my need for dependence on anti-rejection drugs. I am sad that my life with heart failure will continue. I am happy not to be in the hospital on days I have more energy. And then I can’t wait to have a new heart during the days when I feel very sick. My kidney function is slowly declining so we are changing meds to try to address that.
And so I will wait. I will practice patience and gratitude. Especially this time of year. I am thankful for all of your caring and support on this long, uncertain journey. Be healthy and well this holiday season, friends. ❤️
Heart Sick 