I had a few appointments in the last month including a fancy EKG, lung function test, device check, and an appointment with my transplant doctor. I also had 16 vials of blood drawn for labs.
The fancy EKG showed my heart is more electrically unstable than two years ago. My EKG measurements show I am at increased risk of VT. Luckily I have my defibrillator in case that happens. This also doesn’t surprise me because my PVC counts have been steadily increasing over time. I have about 10,000 per day, up from 6,000 per day two years ago. (PVCs are inefficient beats that aren’t super serious but can impede your function if you have too many.)
My defibrillator has three months until the battery alarm will go off. I am going to stop providing possible timelines to surgery because the timeline keeps getting pushed out. Which is good! The device nurses said it’s probably because I haven’t needed my device to provide “therapy” (aka a shock to my heart) which drains the battery quicker. So maybe sometime this summer I’ll need a replacement…? I will update you again when I hear the alarm go off.
I passed the lung function test which is good. My lungs continue to work well despite my heart’s low function. All of my labs look good as well – nothing out or the ordinary for my labs. So that’s good too and means my organs are doing well.
My transplant doctor is happy with all of test results. He continues to ask a lot of questions about my quality of life and ability to do household tasks and take care of myself and Ava. I continue to do okay at home with some help from my Mom and Mark. We will repeat the right heart cath and cardiopulmonary stress test in May.
I am getting excited for our spring break trip to Texas to see Mark’s daughter, Elyse. Mark, Ava and I are traveling to Houston and Galveston for Ava’s spring break. I am thankful that I am still able to travel, even though I struggle with fatigue. And I am thankful that I have a supportive and understanding family when I do get tired. Sometimes my limitations are their limitations. Our travel team (Mark, Ava and Elyse) are super supportive and patient with me. I am very lucky! ❤️
Heart Sick 