Last week, I had a follow-up with my pulmonary hypertension specialist. I find it hard to mentally prepare for these appointments. In the days and weeks leading up to my appointment, I start to panic, worrying about whether I seem more short of breath or if I have any signs of heart failure.
Despite my best efforts, an uneasiness washes over me, completely consuming me. I find it difficult to sleep, get out of bed, and function as I normally would. I become consumed by fear, worrying that this is the appointment when I get more life-changing bad news.
I’ve learned that these are not simple checkups, but rather are monitoring the disease. PH is a progressive disease, and these appointments are checking for any markers that would indicate my health is declining or the PH is advancing.
At my PH appointments, I am subjected to challenging exams, like the 6-minute walk test. My treatment plan depends on how my body responds during the test, how far I am able to walk, and how low my oxygen saturation drops. Obviously, I feel a lot of pressure to perform well during the walk test. Even the slightest decrease in my oxygen saturation or distance walked could indicate the dreaded decline.
This is where a lot of my anxiety comes from: These appointments are essentially tracking whether the disease is advancing, one of my worst fears. Because idiopathic pulmonary arterial hypertension (my official diagnosis) is an invisible illness, there are no concrete tests to see if the disease is advancing. There are few markers in my blood work, and PH doesn’t show up on scans the same way something like a tumor would. As such, a 6-minute walk test is one way used to track how well I am doing.
Although I am extremely thankful to share that my follow-up went well, I always leave my appointments with a sense of a sadness and confusion. I think this stems from knowing that with a disease like pulmonary hypertension I am never out of the woods, because PH is considered incurable and progressive. By the end of my appointment, my specialist already had started to discuss what kind of tests he would like me to undergo next time.
Living with pulmonary hypertension means that I will need to have these appointments for the rest of my life to track how my health is doing. No medication that offers a chance of remission currently exists, nor is there a medication that could make PH a more manageable chronic illness, as opposed to a life-threatening one.
While PH medications have improved greatly in the past decade, there is still a lot to be desired. I’ve seen the introduction of several PH medications since my diagnosis, but I live in Canada, where newer and less invasive medications are not accessible to PH patients. (I understand this is an issue many of us with PH struggle with worldwide.)
Despite all of the adversity and challenges, being diagnosed at a later stage of PH has certainly made me appreciate my current health. I’ve felt more confident this summer to try more activities I would have done before my diagnosis. I made sure to share with my specialist how much I have been trying to do this summer, from going to a wedding to going on adventures with my boyfriend to small towns near where we live. It is important to me that my doctor knows how much I value my life and how much I have been doing.
Just the other day, my boyfriend and I traveled to a goat farm off a highway in the town on which the TV show “Letterkenny” is based. I treasure these little adventures because they help distract me from focusing on the worries that cloud my mind. After all, it is hard to worry about what could happen when you are petting a baby goat with little tiny horns.
Feeling as if I can never get out of the dark and dangerous woods that PH has placed me in is daunting. But, for now, I can breathe a sigh of relief. Right now, things feel good. So even though I may feel scared at times, especially before an appointment, it is important that I remain hopeful, thankful, and happy, too.
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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.