When going to the hospital for tests, one always hopes and prays for the best-case scenario.
Last week, I had a number of tests and was lucky enough to get pretty good news across the board. My walk test was good and has definitely improved since I’ve been on Uptravi (selexipag). My NT-proBNP levels were low at 100 pg/mL (half of what they were last time), and my echocardiography showed that the small bit of fluid near my heart had decreased. Things are never simple, though, as my right ventricle is still severely dilated and shows some impairment.
But it’s pretty much the best I could have hoped for — so why did I leave the hospital feeling so emotionally drained?
Because my pulmonary hypertension (PH) is well-managed, it’s easy to forget what I’m up against, and to some extent, I live in denial. Going into the hospital to speak with consultants always serves as a bit of a reality check.
It reminds me that even my best-case scenario isn’t great. It doesn’t look like a “normal life.” My consultants were really positive that I seem stable, but in the same breath, they hoped selexipag would work for a while before they had to think about IV medications for me.
Even hearing the word “IV” freaked me out. Given my four different oral therapies, I’m aware that I’m out of other options, but hearing it out loud took me aback. It’s terrifying to think that my time walking around free from medical equipment is limited. But then again, there’s a lot that is terrifying about living with PH.
I almost felt guilty walking away from the hospital feeling down. It could have been so much worse. Many of my fellow PH-ers deal with worst-case scenarios. I am acutely aware of how much I have to be grateful for. As someone who has remained relatively stable since my diagnosis three years ago, my story already looks quite different from that of many others.
Grieving the loss of my health has been a complicated process, and it comes in waves. I have periods of not thinking about my illness too much, which is a massive privilege, and then medical appointments force me to think about my situation.
To some extent, this is natural, as a little bit of denial can be a decent survival tactic. It allows me to live a life not entirely dominated by disease or health anxieties.
While I have complicated feelings about my results, having a chronic illness means we must celebrate the small wins — so I will force myself to celebrate these results and allow myself to breathe for a moment.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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