Next week I have two days of appointments at the hospital. The first day I’ll have labs, a cardiopulmonary stress test and a right heart catheterization. These tests tell doctors if I am sick enough to be admitted to wait for a heart and move up to a different transplant status. I remain at transplant status 4. The second day I have lung tests, a six minute walk test, and CT scans. These tests will tell the doctors if I am still healthy enough for transplant surgery and recovery. Having these tests back to back remind me that my window for transplant is quite small. Sick enough to be near the top of the list. But not too sick to be ineligible for the surgery and recovery. It’s been one year since I had these tests so I have some anxiety about getting unexpected test results with the right heart cath. I am hopeful they will tell me everything is stable. But I really don’t know how my heart is doing.
I don’t have any major updates on the status of my everyday health which is good. I am still very tired. Bad days are still triggered by lack of sleep, too much stress, and over-exertion. I sleep 12-14 hours a day. My waking hours are fairly productive – grocery shopping, cooking, cleaning. Not all on the same day of course. The feelings of a heavy chest, heavy limbs, and the need for quiet are frequent.
The one noticeable change in the last year is a decline in my cognitive abilities. My memory is not great. I mentioned this to my doctor at my appointment last fall. I don’t remember his exact response but he told me it was expected. As I decline, my heart has a harder time providing my brain with oxygen. To which I replied, “…and this decline is necessary to get sicker to move up the list.” So if I am forgetful around you, please allow me some grace. I might forget you told me something. I might forget plans we made. Or maybe I’ll tell you I’ll do something and I won’t.
I also notice that my brain doesn’t do well trying to process more than one thing at a time. I get agitated when trying to think through too much at any given time. More so when I am physically tired. I ask for grace in these moments too. While I know logically why the brain fog is happening, it doesn’t help in the moment when my brain feels like it is shutting down and I am not able to think. Aware of this, my need to plan and stay organized and scrutinize details is greater. So again I require grace when I am scrutinizing details that don’t seem to be important.
It’s been four years since my doctor told me it’s time for transplant evaluation. It’s been a roller coaster of emotions. Right now I am happy to be waiting for a heart. Although it’s not a scientific measurement, four more years with my failing heart will probably equal four more years of life. Nothing is more precious than time. Even if that time is spent sick with heart failure. I am so grateful to my family and friends to continue to provide me with grace and patience as my limitations slowly grow. I’ll provide an update later next week with results from my cardiac tests. Thank you for continuing this journey with me.
Heart Sick 