An Invisible Illness and the PHight of Our Lives
Wonder Woman has an invisible jet. Harry Potter has an invisibility cloak. I have an invisible illness. The people I sit next to on the metro cannot see it. Members of my family cannot always see it. Every day I work with and walk among healthy individuals shrouded in my own cloak of invisibility called pulmonary hypertension.
Here’s the thing. I don’t want my disease to be invisible. I don’t want pulmonary hypertension to be the largely unknown rare disease that it is. Pulmonary hypertension is not the same hypertension — or high blood pressure — that most people manage with a few pills. Pulmonary hypertension (PH) attacks the heart and lungs. PH causes elevated arterial pressures in the lungs, forcing the heart to work even harder to pump blood from its chambers. This can lead to heart failure, and there is currently no cure.
This disease often masks itself as another respiratory disease, wearing its own invisibility cloak that makes it difficult for doctors to diagnose. The road to a proper PH diagnosis can be long and full of frustrating twists and turns. I know this from experience.
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I decided to get a physical in summer 2015 because something didn’t feel right. I was having bouts of shortness of breath on my walks to and from work. Sure enough, a doctor told me I had asthma and calmly sent me away with prednisone and an inhaler. As the year turned, I began using in-home oxygen to manage the persistent hypoxia and shortness of breath. I sought respite at street corners watching the lights turn from green to yellow to red as my lungs heaved to suck in air.
While my doctors were hesitant to try more exploratory procedures, my symptoms were getting worse, like Death Eaters in pursuit of Harry, Ron, and Hermione. The morning I woke up feeling like a giant was squeezing my tiny heart between his forefinger and thumb, I knew I had to take my health into my own hands. I checked myself into urgent care with little faith that the same doctors would reach any new conclusions. I just wanted to feel better.
An overnight hospital stay quickly turned into an unplanned staycation. After getting transferred to another medical center and receiving a battery of tests, I finally heard the words: pulmonary hypertension. What was once unknown to me now had a name.
It is a struggle when family and friends tell me that I don’t look sick or that I seem very healthy. Those intentions are all well and good, but those words help keep this life-threatening disease in the dark while I am trying to shine a bright light on it. Like Wonder Woman using her invisible jet to fight injustice, my diagnosis has turned me and many others around the globe into PHighters — working to raise awareness and fight for longer life expectancy for us and those still without a diagnosis. We support each other in online forums, we raise money for research, and we speak out to help people better understand the symptoms and causes of PH.
Many PHighters I know are hopeful. Three decades ago, very few medical therapies existed to treat the disease. People died without a diagnosis and doctors just did not know how to handle these patients. PH used to be a death sentence. Patients are told that, untreated, they have one to three years to live. Today, medications can help people live longer, more productive lives. I am two and a half years into my diagnosis. While I have already felt the scourge of loss when PH cuts a life short too soon, I remain optimistic.
November is a month dedicated to raising awareness about PH. Patients, doctors, caregivers, and advocates have shared stories, talked to their elected representatives, and spoke out to put a spotlight on this often misunderstood fatal disease that needs more attention.
Through advocacy and research, the PH community gives this life-threatening disease greater visibility. You might not know about PH, but it’s probable that you know somebody who is affected by the disease in some way. We are here, we are just invisible, and that is all the more reason for PHighters to stand together and harness hope for a cure.
Follow Mike Naple on Twitter @mnaple.
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.
I fully agree. The problem is more complicated when I am out doing some of the things that I think are contributions to where I live. People assume I am well. I tell them I am not but I know they would only pickup on the fact I have something wrong with my heart. I have drafted a book in which the protagonist develops PAH and although the story is probably too niche for most readers those who do read it will be introduced to PAH. The story is really about an gifted Air Force Pilot and his academic wife. In some ways it reflects my effort to be normal.
Mike, Your column was welcomed by all PHfighters. It is important to acknowledge this silent disease. I was diagnosed about 2 years ago. A right heart cath and VQ Scan confirmed CTEPH. I am not a good candidate for PTE or BPA treatments as my clotting is very distal and not reachable. I am 76 years old and am on oxygen 24/7, Adempas and Eliquis along with Tudzorra Pressair inhaler for the COPD. My CTEPH is secondary from COPD (mild).
I de saturate quickly when I exert myself in anyway. It can be frustrating, but I face each day with a positive attitude to get by.
Between my cannisters and portable oxygen unit I keep as active as possible. Utilizing electric carts for shopping and my personal cart when my husband accompanies me (I cannot put it together myself). We went on a 7 day cruise last July and have plans for another in February. My Sequal portable is my best friend on these occasions. I have extra batteries along with a desk charger to keep me going.