Back to the Beginning of My Diagnosis: Part Two

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.

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2 comments

  1. Joanne Sperando says:

    Hi Rebecca, Great articles. thanks for sharing your journey. I’m a PH patient too. Diagnosed at 34, 3rd person in my family to get PH. I’m still here 18 years later and grateful for the doctor I have and the meds I take. I’ve heard stories like yours so many times. WOMEN are often not taken seriously when they complain about shortness of breath, but when a man has the same issues, BAM! Tests are ordered immediately. I was wondering if you circled back with all the doctors you saw previously to share your diagnosis. And that nurse that told you to research PH should have been astute enough to refer you to the Pulmonary Hypertension Association’s site. It’s never too late to EDUCATE these people and hopefully, spare the next PH patient the same treatment. Thanks again for sharing your journey.

  2. William Young says:

    I’m waiting to see a pulmonologist next week. My breathing problems began certainly earlier, but they became very noticeable at the end of January. As I’d had a heart attack ten years ago, I saw my internist and then my cardiologist. My internist was concerned enough with how I was breathing that I had an immediate CT-scan to see if I had a pulmonary embolism. I didn’t. All my vitals were fine. My cardiologist did an echocardiogram. He tried to do a stress test, but I only lasted a couple of minutes before he stopped because I was so out of breath. A couple of days later I had an angiogram and an angioplasty – my previous stent was in great shape but there was blockage further down the same artery. And for the next week, everything seemed fine. A week later, my difficulty breathing returned. The cardiologist said to see a pulmonologist and I made the appointment. In the meantime, I walked 10 New York City blocks to a store. When I got there, I had to lie down until I recovered my breath. This scared me enough that I walked home past a hospital, walked into the emergency room, and the triage nurses immediately took care of me and rushed me through. But 3 hours later, the terrific doctor who saw me said they’d done everything they could do from an ER standpoint. My vitals were all fine. My chest X-ray showed nothing. I was concerned that maybe my new stent had failed, but absolutely no one thought that. I saw my internist the next day to bring him up to speed. He brought up anxiety (as had the cardiologist and the ER doctor), so I’m now on Klonopin, which gives me a lovely calm feeling but does absolutely nothing for my breathing. But he called my cardiologist to get the okay for that, and the cardiologist saw me the next day. I’d been reading up on what causes Dsypnea, because I was running out of possibilities of what it might be. I asked about pulmonary fibrosis, but he said he would hear a sound like velcro if that were the case. He did another echocardiogram and finally, finally saw something. And he said these words I’d never heard of: pulmonary hypertension. I’m sorry, there’s no way you’re not going to look that up. Repeatedly. Luckily, I have a mordant sense of humor, a flair for the dramatic, and enough sense to realize that it’s a complicated diagnosis to make and it will take a while before I can even say I have it. I very much enjoyed reading your story and found it very helpful.

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