The last two months have been rough, folks. While I tend to lean into positivity and this post has a happy ending, I can’t ignore that the journey was hard. I considered just telling you about the happy ending and leaving out the hard parts. But there are people who read this blog to learn about the honest journey and the honesty is helpful in their journeys. So read on for honesty…
Last November my V02 Max scores dropped from 11-12 to 9.5. This test is not used to determine heart transplant status but it is used as a non-invasive barometer of my heart health. Due to the drop in my score, my cardiologist moved my Right Heart Catherization (RHC) — which is used to determine transplant status — from May to February. As a reminder, I have been listed as a status 4 heart transplant patient for 39 months. I will not match as a status 4 due to my abnormal high antibodies. I will need to get sicker to move up the list to find a match.
The holidays were very good although I was limited by fatigue. After the holiday buzz died down, my thoughts shifted to cardiac testing. My initial feelings were fear and dread. I was afraid my heart function had dropped and they would tell me it’s time to be admitted to the hospital to wait for a heart. My biggest fear is leaving my daughter for an unknown period of time. I have desperately hoped to put off transplant until she was done with high school. So I started 2026 in fear of being hospitalized.
This fear was compounded by the federal occupation of Minneapolis and the infamous murders of Renee Good and Alex Pretti. The murders happened just a few miles from my house. It is difficult to determine which feelings were attributed to fear of hospitalization and which feelings were fear and sadness for my community because it all felt so heavy to carry.
All of this was made worse by my health insurance cancelling all of their Medicare plans so I started a new plan in 2026 unsure what my new insurer would be willing to cover in my vulnerable state. Three programs that paid for unaffordable medications were also scrapped for 2026 so I am left trying to figure out my medication management.
The ground beneath my feet felt so unstable the last two months. Unsure about my ability to procure my meds. Unsure about how my new insurance will cover my care. Unsure if I would be hospitalized for months. Unsure if it was safe to go to the grocery store.
I had cardiac testing last week. My VO2 Max test was slightly better than last November with my score rising from 9.5 to 10.0. The RHC showed stable results. It’s likely my heart is getting weaker as my VO2 Max tests show. It’s a stress test so my heart is struggling more with exertion. But my heart and body must be well compensating because at rest my numbers are stable. I was elated and relieved the day of my tests to get these results.
The next days however were a bit darker when I began thinking about continuing to live in a decreased capacity for an unknown amount of time. And how it must get worse before it can get better. I sat with those low feelings for a few days. But I’ve learned I need to just sit with these feelings and give them permission to exist. If I ignore them, they stick around and try to surface again and again until I face them. This emotional roller coaster is why I petitioned again to repeat the RHC in one year instead of 6 months. My cardiologist agreed with a few small conditions including less invasive testing at 6 months.
I am coming out the other side of these hard months with more optimism about the next year of life. If I can make it to February 2027 for my next RHC, I will be three months away from Ava’s high school graduation! I have so much pride and love for my Minneapolis and Minnesota community although I continue to worry about my neighbors and their safety. I am optimistic I will figure out my insurance changes and medication issues. Overall the ground is feeling more solid again and I am so thankful for that. I send you wishes for solid ground beneath your feet as you continue into 2026. ❤️
Heart Sick 