He showed me a chart that was sort of like a stoplight. The chart had green, yellow, and red markers. Red is an indication of “bad” results, and more than a couple of yellow results is undesirable as well. Much to my doctor’s surprise, all of my results were in the green. I have some unusual symptoms that have led to many other specialists, tests, and even heavy–duty lupus medications for several months. So, he was curious to see if anything unusual would show up on my heart cath. My heart, which was in severe right–sided heart failure three years ago, was now functioning normally despite my higher–than–normal pressures.
I was in the green, and my heart is functioning normally. That’s good, right? Some might even say that is cause for a celebration — especially after being as sick as I was during diagnosis.
Wrong. To wrap up the conversation my doctor asked me for the seventh time whether I have insurance. “No, I used to work in insurance. I lost my coverage when I had to retire,” I repeated. (Please stop dangling that delicious Uptravi carrot in front of my face if I can’t have it.) He then went on to say that it was OK because he will put me on IV medications if things start to change.
In my mind, I heard the sound of a record scratch. I wanted to ask, “Excuse me? Did I not just have pretty good results?” Here I was expecting a bottle of champagne to be spritzed over me like I had just won a NASCAR race, and my doctor was discussing a treatment plan for “when” I get worse. He even went on to say that IV medications are not something I need to be on right now.
So, why bring it up at this appointment?
I get it. I know that pulmonary hypertension is progressive. I’ve felt it ravage my body and crumple up my future like a piece of trash, barely missing the garbage bin. But do we really have to talk about the “decline” at every single appointment?
Truthfully, it is exhausting always leaving my appointments feeling so pessimistic about my future. And with PH, there are seldom reasons to celebrate. I don’t have three more rounds of chemo before I am done treatment, the chance of remission is viewed as a medical miracle, and unlike other diseases, PH can’t be cut or poisoned out of me.
As a PH patient, I feel like we so rarely get a chance to celebrate victories involving our health. It is really important to me to acknowledge when positive things regarding my health happen, and I need my doctor to embrace that as well. Hope is powerful; it is humane, and it can help ignite our will to live during dark times.
If we have a reason to be optimistic or celebrate, let’s not worry about what could happen. Instead, let’s focus on what is good today.
So, can we celebrate instead, please?
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.
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