‘PH is so difficult. Every milestone, big or small, should be celebrated.’
When Janessa Curnow was diagnosed with pulmonary hypertension, she was inspired that her doctor had been treating some patients for 10 years. So she set a goal she wasn’t sure she could keep. This summer, she met that goal and celebrated her 10th anniversary of living with pulmonary hypertension. Janessa, a Pulmonary Hypertension Association volunteer from Grand Rapids, Michigan, shares her story with PHA’s Right Heart Blog.
By Janessa Curnow
On July 8, 2013, I was diagnosed with pulmonary arterial hypertension. To a 26-year-old who had spent the previous summer walking around Europe, the news came as quite a shock.
I was lucky that my city had a pulmonary hypertension clinic, where I met with one of the clinic’s original doctors. As all PH patients find out, while there is no cure, there are various medications. Doctors can’t truly give you an expected life span because each person and how their body responds to treatment is different.
At my first appointment, Dr. Wilt told me that if I didn’t start treatment, I’d likely have about a year before PH took me out. But if I started treatment, he said there was no telling how long I could live.
At the time, the clinic had been around for 10 years. Dr. Wilt said he’d seen some patients for the entire 10 years, a sign that living 10-plus years with PH was possible.
Good days and bad
Based on how I was at my first pre-treatment appointment, he said he would be so happy if I could make it 10 years.
That stuck in my brain. Since then, I’ve met plenty of people who have lived with PH for much longer than 10 years. So I kept 10 in my head. I wanted to live longer than 10 years, of course, but 10 was the first goal.
Over the years, there have been ups and downs, as any PH patient can tell you. I’ve had many hospital stays, ER trips, doctors’ appointments, new medications, right heart catheterizations, echocardiograms, pharmacy calls, package deliveries, good days, bad days, and everything in between.
And there has been so much life outside of PH for which I am grateful.
A cause for celebration
As July 8 approached this year, I was happy and proud that I had made it 10 years. Sure, there is plenty left to go (if I’m lucky), but 10 was the big accomplishment I set out to meet from Day One.
So I threw myself a party. With the help of friends and family, I rented a nearby cafe, created a large charcuterie board, hired friends to create a few amazing desserts, and organized board games and trivia. I invited the people I loved most, and we had a wonderful time saying, “F*** you, PH!”
Although Dr. Wilt had left the clinic in 2020, I invited him to the party. I was so glad to have him there and introduce the man who saved my life to all of my loved ones. We even discussed the next step my new PH doctor and I have been planning.
PH is so difficult. Every milestone, big or small, should be celebrated. This was my first big goal, and it was only appropriate that I celebrate big. Here’s to the next big goal: 20 years of living with PH!
