The first thing I ever learned about pulmonary hypertension was that Stage IV patients like myself only lived 6 months post diagnosis. I read this on the first hit off of Google because my diagnosing doctor only handed me a prescription and sent me on my way. Upon seeing a specialist, I was told I probably had a good two years in me if I was lucky but I’d never work again. I was 23 years old.
At the time it seemed like my entire life was telling me what I couldn’t do; my body wouldn’t let me complete the simplest tasks, I couldn’t keep a steady job due to my health, my medical bills were through the roof. I couldn’t live on my own because I could hardly take care of myself with the frequent hospital stays. I could barely even manage the relationships in my life. The disease made me sick and the treatments made me sicker; the medications I took for the treatments made me even worse. It was like a cruel joke
At about two and a half years post diagnosis I hit a plateau - no longer was I so sick that everyone thought I was going to pass out and die every time I attempted a flight of stairs! I was just sort of there. I put in my 8 hours at a desk (long gone were my days as a pastry chef) then I went home. Most of my friends had stopped calling on me and my biggest ambition was to make it a few months in a row without a site infection. Not exactly what I expected from life.
Finally one night I relented and went out to see a band play in a small seated venue downtown with a friend. I survived the minor anxiety attack of climbing a flight of stairs in front of others. We ended up going out for drinks afterwards with the band and a bunch of people neither of us knew and didn’t make it home until 3am. To my surprise I still woke up the next morning! And even better, I had such a great time with all these strangers. I had forgotten what it was like not to be treated like the sick girl. That’s when it occurred to me that I had been spending so much time focusing on staying alive that I had been doing a really poor job of living my life.
That one change in perspective changed the entire direction of my life. Instead of watching bad TV every night at my mom’s house, I moved into an apartment with a friend. I started spending more time with people who only knew the post-diagnosis me so there were no expectations of who I was or what I was capable of. I went back to enjoying the things I loved - food, live music and traveling. And even though I was being harder on my body I was feeling better than I had in years. Medicine had taken me far, but this new attitude made a world of difference in my capabilities.
Today I am nearing my 32nd birthday and 9th anniversary with pulmonary hypertension. I do pretty much anything I want (as long as it doesn’t include stairs or anything athletic). One of the most important aspects of my life is my volunteer work with the PHA. What started as being active in the chats has grown into fundraising, advocacy, creating programming for young adults, speaking at conferences and most recently creating notepads for doctors so patients find out about PHA early and don’t have the diagnosis experience that I had. The ability to feel like I’m fighting back empowers me whenever I feel helpless against this disease.
Here’s some wisdom I’ve gained through the trials and errors of almost a decade of life with pulmonary hypertension:
Don’t put a timeline on yourself. Keep having dreams and goals and go for them! When I was first diagnosed I stopped going to the dentist because if I was going to die in 6 months I didn’t really need to go to that teeth cleaning, right!? After about two years I realized that was probably a bad idea. Now I keep a google doc of places to see and things to do and eventually I will cross every one of them off.
Don’t be scared to have people love you. It’s easy to shut people out using the “it’s all going to end badly” excuse or the “they won’t get it” excuse. But guess what, there’s someone out there willing to love you regardless of what tubes are coming out of your body and regardless of what the statistics say. Don’t waste valuable time because you’re scared. Treatments are getting great and we’re going to be around for awhile.
Let me put a caveat on this - we do have some limitations as PH patients and you should listen to your doctor/body. But don’t listen to the blanket statements that say things like you’ll never work again, never live a normal life again, you’re going to die in xx years. You can do whatever you want - it just takes willpower, patience, and the right combination of drugs. I have a PH friend who ran one of those Warrior Dashes and I could’ve never done that at my healthiest! It’s about setting a goal and going for it! I own a house, work full time, and travel whenever the bug hits. That’s a far cry from the girl who couldn’t get enough breath to complete a sentence.
Having PH is hard - it’s a complete life adjustment. But it’s up to you to decide whether you use it as an opportunity to slow down and really appreciate every moment and do those things you want to do but maybe wouldn’t normally do or see it as a hinderance that drags you down. It took me 2.5 years to make that decision so it’s not something that comes without a little effort. I’ll close with one of my favorite quotes:
“Always when you’re crying you could be laughing, you have the choice” -- Andy Warhol
The PHight or Flight Project would like to thank Brit for sharing her incredible PH journey for PHighter Friday!
* If you have an inspirational PH journey that you would like to share to help provide hope to those who are newly diagnosed, please contact me at email@example.com. More information about sharing your PH journey for a #PHighterFriday can be found under the Share Your PH Journey/Contact tab.