I have a day of tests next Wednesday (11/9) including labs, echo cardiogram, cardiopulmonary stress test, and a right heart cath (RHC). I meet with my doctor the following Monday (11/14) to talk about the results so I will post an update sometime after that appointment.
Speaking of results… My last blog post mentioned that doctors are looking at my RHC results closely to know when it’s time to hospitalize. Doctors previously told me it’s time for hospitalization when my RHC pressures rise to a specific level. My pressures just aren’t rising at the same rate as other tests are declining. Today I stumbled upon a medical journal article about ARVC and transplant. It was published last spring that showed exactly what I was talking about!
My pressures are currently right where the ARVC patients from this study were at time of transplant. Again I know I need to be sicker than most patients because of my high antibodies but I am happy to have confirmed my suspicions about this anomaly in my results.
Other good news from the article is that ARVC heart transplant patients have better outcomes and survival rates when compared to other heart transplant patients. So that is super encouraging. Here is a link to the journal article if you want to read more.
The quote image from the top of this post is a reminder for myself. I get discouraged and a little low when I go through testing. It is hard to hear, “You are sicker than you were before but you are not sick enough.” It’s a cold confirmation you haven’t hit the bottom yet and things will need to get worse before getting better. Or the alternative is, “It’s time for hospitalization.” Also not a great option but it’s the better option at this point.
So this quote is a reminder to look for the light. At times things do feel quite dark. My mind struggles and feels like life is passing me by while I rest in bed. My body struggles when I try to participate in life. I struggle no matter what I do. This fact seems amplified after testing. But there are definitely moments of light and joy every day. I need to focus on the light. It’s there. I just need to meet it.
Heart Sick 