Hey everyone,
Its been a few weeks since my last check-in so I wanted to jump on and give a little update and give a plea to stay home!
Truthfully, this week was really hard for me. We tried to decrease an anti-inflammatory medication (Indomethacin) that we are using for the Dressler’s syndrome (pericarditis) and it did not go well. I’ve been in a lot of pain and have had 3 telemedicine appointments in the last 7 days.
Given all the pain, my PCP and I wanted to try an adjustment of the second pericarditis medication, colchicine, we are using, but cardiology disagreed because it interacts with one of my other cardiac medications and an increase would be too risky. We can’t use the Indomethacin long term (think Ibuprofen on steroids), because of a concern for a GI Bleed or Kidney issues, with my other medications. We do have to taper, but we also have to balance it with when my body is ready, so it puts my doctors in a tough spot, as always-risk versus benefit.
I came home from the last Hopkins stay on colchicine, for 2-4 weeks which has now been extended to 3-6 months, if not longer, because they think thats how long it will take to resolve. We are slowing the wean down of the indomethacin and going back to the dose I was on before Monday, to get pain back under control. I’ve lived with chronic pain for 5 years and this took the cake. We are hoping by slowing the wean of the indomethacin that it will give the colchicine longer time to work. Thus, the inflammation will go down and therefore the need for indomethacin will also go down.
You know what else is hard besides pain? Doing medicine via telemedicine. Why? My doctors would love the opportunity to do a physical exam. I’d love to know despite all my pain, that my heart sounds good. I am receiving really good care, but it would be even better to see my doctors in person. But, it is simply too risky to get labs, visit a doctors office, etc.
The hardest part of the past week? Seeing and hearing about people not social distancing. If you aren’t practicing social distancing because you are tired of being home, I have 3 words for you…get over it. I didn’t fight through the last 5 years to be taken out by COVID-19, so I literally can’t leave my house. When people don’t social distance it increases the risk of exposure and spread. It’s selfish and their privilege is showing and I am angry about it. Why? Because its delaying my access to the best care and impacting my health.
I’ll be writing a few more posts on social distancing, but for now, let’s start with a plea to stay home. I beg of you, stay home, so we can flatten the curve. For my health, for the health of others like me, for our frontline and out of respect to the lives lost to this disease, please stay home.
Victory of the heart 