Next Monday I will have been listed for heart transplant for 500 days. I am listed as a status 4 patient with little hope of being matched because I have so many antibodies. Status 4-6 wait at home for hearts while 1-3 wait in the hospital. The lower the status number, the higher you are on the list. Hearts are offered first to status 1 patients, then status 2, and so on. Since I match with so few hearts, I need to be at least a status 2 to have a statistical chance of matching.
I saw my transplant doctor about a month ago for a routine appointment and I also had labs and transplant testing. Everything looks stable including my kidney function which is good. I have more cardiac testing next month including a right heart cath (RHC) and cardiopulmonary stress test.
Next month I will have been stable for two years, after two years of steady decline. “Stable” meaning not declining. The doctors are waiting for me to decline to the point of requiring long term hospitalization so I can be listed at least as a status 2 patient. So in this case, “stable” does not mean I am well. It just means I am not actively declining. It’s like I walked to the edge of a cliff two years ago. I can see over the cliff and I know I will need to jump at some point. I’m not sure how I will land and what challenges will be down there. I was ready to jump two years ago. But instead of jumping, I am taking a seat on the edge of the cliff. Swinging my legs, humming a tune to myself, and thinking about the inevitable free fall at an unknown point in my future.
Overall I am happy to have stabilized and sitting on the cliff’s edge. It’s unusual to stabilize with heart failure this late in the game so there is little data about what to expect. There is also no way to know when my crazy genetic disease, ARVC, will decide to kick into gear and damage more heart muscle.
I am working to accept this gift of time with gratitude. Some days it’s hard to have gratitude. Every day I feel sick. Even though I am “stable” my symptoms ebb and flow. And the fatigue is like a heavy brick I must carry around with me wherever I go. I get grumpy some days when I can’t accomplish what I had planned – which is a heavily scaled back expectation compared to what I used to be able to accomplish – even with my very careful planning. I spend a lot of time in bed resting which bums me out some days.
But the flip side of chronic illness is that I am so grateful that I am still here and kicking. I was able to watch my daughter’s high school performance of Oklahoma. I was able to celebrate my mom’s birthday a couple weeks ago – and her eight year heart transplant anniversary two days before that. I am able to travel with Mark to St Louis in May to visit his daughter, Elyse. I am able to hang out with my friend Becky at least once a month. Most days I am still able to walk Eddie and enjoy the birds singing and fresh air on my face.
As always, thank you for continuing this journey with me. It’s taking A LOT longer than anyone anticipated so I appreciate you hanging in with me.
500 days. Time is such a precious gift. Be well, friends. ❤️
Heart Sick 