February 1st Check In

It’s been about a month since I have posted so I am checking in. I am currently listed as a level 4 heart transplant patient. This means technically I could get a call any day that a heart is available but statistically, given my blood type and antibodies, it should take about 10 years before the call comes. So I’m not holding my breath. I will need to get sick enough to require long term hospitalization as a level 2 transplant patient before I get matched with a heart.

Now that I am officially listed, I have entered onto a conveyor belt of sorts for regular testing. Most tests are just repeat testing from the initial transplant work up two years ago. Some of the tests include pulmonary function test, electrocardiograms, drug/alcohol testing, additional appointments with my transplant doctor, social worker check in (to make sure I still have a plan in place for after transplant), check ins with the clinic pharmacist to make sure my meds aren’t causing any issues and, last but not least, lots of labs. We will retest the big tests (RHC and cardiopulmonary stress test) in May.

I have been plugging along. Resting when I need to, taking care of Ava and Eddie, and managing my meds. It seems every week there is a situation where I need to be on the phone for a long time to get my meds. The very cold is similar to the very hot – my heart hates the extremes. So I try to limit my time outside.

My ICD alarm should be sounding off sometime in March to indicate the battery has reached the end of its life so that surgery will happen some time this spring.

I know I said Palm Springs last September would be my last trip before transplant. Well, I am a liar. Mark and I are traveling with Ava over Spring Break in April to Houston and Galveston to see Mark’s daughter, Elyse. Elyse is doing a service year in Houston for the Jesuit Volunteer Corps and we are excited to see her! We will spend most of the time at the beach in Galveston. Fatigue and fluid management is a huge challenge when I travel but this is an important trip so I will figure it out!

That’s all from me for now. Stay warm and healthy everyone. As always, thanks for riding along on this transplant journey with me. ❤️