Back to the Beginning of My Diagnosis: Part Two
In continuation of my previous column leading to my diagnosis, I had just been told by my physician’s nurse to research pulmonary hypertension.
To this day, I still claim that looking up pulmonary hypertension online was one of the worst mistakes I’ve ever made. There was article after article saying how the life you once had was over forever. Your life will be shorter, miserable, and you’ll have so many limitations. It seemed like a death sentence.
I finally went in and had my right heart catheterization. I still remember lying there afterwards, drowsy and confused from the drugs, and the surgeon came in. “Yes,” he plainly stated to my husband. “Her pressures are too high. This is definitely pulmonary hypertension.” He said it, then promptly turned and left. I burst into tears. I cried, and cried, and cried. I had been holding onto the smallest amount of hope that this wasn’t what it was. It HAD to be something else. Hadn’t I been through enough already? But there it was, and there was no denying it.
My husband and I made a list of dozens of questions. What is the average life expectancy? Do I need to change my diet? How do I get a handicapped parking pass? Every question seemed to chip a little more of who I was away. I had been strong. I had been capable. I had been ready for life. Now I was tied to an oxygen tank discussing disability and handicapped parking. None of this seemed real.
A couple days later I met my new specialist. My doctor, who was a true godsend, patiently sat with us for about two hours. He answered every single question we had, and more. His nurse kept assuring me this was all going to be okay. I would be okay. We just had to come up with a plan. The first part of the plan? Do not look online. I readily agreed.
Those days were the hardest. I was devastated by this diagnosis. Brought to my knees with the wind knocked out of me. But there was an answer. After months of feeling — of knowing — something was wrong, and having no one believe me, there was an answer. And that gave me something to work with.
I understand that once you get diagnosed with PH, the foundation under you shifts, and it shifts constantly. It’s like trying to keep your balance during an earthquake. You have to stop holding on to your “old life” and find your new one.
But it’s not all bad. In fact, this new life of mine? It’s pretty amazing, in so many ways I never expected.
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.