September Update

First here is a quick summary of what I have shared on Facebook. In March 2021, my doctor told me my cardiac test results indicated it was time for transplant evaluation. I spent the next six weeks going to 25 appointments to determine if I would be a successful transplant patient. In May 2021, my transplant coordinator told me everything looked really good. Except my antibodies are unusually high. My body chemistry will reject 93% of available hearts. Which means finding a match will be very difficult. Statistically I will need to be listed at the top of the list to get matched. Top of the list means I need to be the most sick of all transplant patients in my region. So my team decided to wait for me to get sicker so I could be hospitalized and listed near the top of the list.

Typically I would have been listed in May 2021 as a status “4” which means I am waiting for a heart at home. Other regions in the US have shorter wait times and the upper Midwest has a higher demand for hearts and longer wait times. My universal donor blood type O also means my wait will be longer – all other blood types can accept an O heart but I can only accept an O heart. But even with these factors, I probably would have found a heart by now as a status 4 had my antibodies not been so high. Most people in my region wait 12-18 months as a 4.

Since May 2021, I have been getting cardiac tests (labs, echo, cardiopulmonary stress test and right heart cath) every few months. True to my disease progression, my function has been slowly but surely sliding down. Last May my doctor estimated I would be sick enough to be listed and hospitalized in the next 6-12 months. The plan is to wait in the hospital for a heart which my doctor has estimated will take 3-4 months.

I go back for more tests on November 11th and then see my transplant doctor on November 14th to discuss the results. (Doing all appointments in one day is getting too difficult for me so I have requested for them to be split.) I also have an appointment with an Electrophysiologist (EP) Cardiologist in October. I have a defibrillator (ICD) implanted in my chest and the battery is about to expire so I will be scheduling surgery with the EP probably for later November to have my device replaced. This will be my 4th device. I will not require an ICD after transplant so it will be explanted during the transplant.

My boyfriend Mark and I are headed to Palm Springs next Sunday for a last vacation before transplant. Travel is becoming more difficult so I’ll be staying close to home after this trip. I am not able to do much while traveling due to fatigue so it just doesn’t make sense to travel. My plan for Palm Springs is to spend time with Mark, sit by the pool and get a massage.

Stay tuned for updates on my fall test results and ICD surgery.