In June, I attended my first Pulmonary Hypertension Association Conference in Orlando, Florida. Sitting in a packed ballroom full of strangers, I had never felt more seen. Many of the faces around me were fellow PHighters, and we were all there for the same reason. I left the conference feeling hopeful. I learned a lot about pulmonary hypertension, met some amazing people, and reflected on the past two years of my life and some changes since my diagnosis. So, I decided to write a letter back to my newly diagnosed self to capture all of these thoughts and feelings. I also want to show others who are just learning about their diagnosis that there is a community of PHighters out there. You’re not alone.
Dear newly diagnosed Mike,
You’re probably exhausted, and you think your arm can’t possibly stand another pinprick from the nurse to draw more blood. You’ve been in your fair share of hospitals, you haven’t been outside in nearly two weeks, and you really want to shower.
You’re probably a little scared. Certainly, a level of uncertainty is creeping in around you. The doctors are discharging you from the hospital with a diagnosis of pulmonary hypertension, a rare disease that affects the lungs and heart. “PH” for short and, no, it has nothing to do with the acids and bases scale you learned about in chemistry class. Your PH diagnosis helps to clear the fog for you; it explains why you can’t make it to the end of the street without gasping for breath. Yes, you’re getting some answers, but that just kicks open a revolving door of new questions.
Getting sick, particularly with a rare disease that doesn’t have a cure, is not an easy turn in the road. It’s not even a nice symmetrical fork in the road. It can feel like a cliff and put you on edge in a way you couldn’t have anticipated. Standing on the edge of that cliff can feel incredibly isolating, leaving you feeling like your life has come to an abrupt stop. You’re going to hear a lot about embracing your “new normal” and get all kinds of advice about managing a disease you still haven’t quite wrapped your head around.
You’re going to feel anger, frustration, anxiety, loss, and hopelessness — and these sentiments can spike in intensity on any given day. You will have successes and failures when speaking with a therapist. You’ll start taking an oxygen concentrator everywhere you go. You will attend respiratory rehabilitation and a support group, and you’ll feel out of place at first.
What I want you to know is that in June 2018 you will find yourself in Orlando. And while you will miss the chance to check out “The Wizarding World of Harry Potter,” you will find yourself surrounded by many other PHighters, caregivers, and medical experts who will understand the struggles you face on a daily basis. While you’ve met many other patients with PH on social media and via email, at the conference you will feel seen and accepted in a manner you didn’t think was possible. You will feel overwhelmed at first since you’ve only ever been in a room with three or four other people with PH. However, that feeling will pass, and you will settle in with those around you, and you will add your voice to the conversation.
You will talk to PH patients you’ve met online, and you will even run into your PH nurse. In an interesting turn of events, you will realize that one of the keynote speakers at the conference is the same woman you met at that first support group meeting. You will feel the strength of the PH community’s bonds.
Over the next two years, you will make strides in living your life with PH. And while the conference will be affirming in many aspects, it will also inspire you to do more to put your health first and push you to be the biggest and loudest advocate for your care. For example, you will learn about the importance of developing an emergency plan. You will hear about the need to conserve energy when you have it, and you’ll get reassurance that other people feel exhausted after an activity such as changing sheets on a bed. You will remember (again) to exercise more.
Mike, I know you’re still adjusting to your diagnosis, and your world feels like a spinning carnival ride right now. But guess what? You’re not on this ride alone. You will meet long-term survivors, patients who have been PHighting for decades, and along with your community, they will be a source of hope for many more days to come.
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.