I used to have a favorite pen. Now I have a favorite pulse oximeter. Things that once would have seemed intimidating, complicated, or downright bizarre have become part of everyday life. Living with pulmonary hypertension (PH) means noticing details most people can afford to ignore. I pay attention…
The PHlip-side
— Jolie Lizana
Jolie Lizana is a Louisiana woman with a strong sense of hospitality and humor. She was diagnosed 12 years ago with systemic sclerosis, pulmonary hypertension, and heart failure. Jolie advocates for invisible, chronic, and rare diseases, and she is a certified legislative advocate. Her perspective as a former sonographer and EMT breaks barriers between doctors and patients. Jolie volunteers with nonprofits and hosts awareness events. Jolie hopes to bring raw truth and vulnerability to her column.
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Living with pulmonary hypertension (PH) involves much more than managing symptoms, taking medications, and attending medical appointments. There is also an emotional side to chronic illness that can be difficult to explain, even to the people closest to us. I know how much energy it takes to manage a…
Pulmonary hypertension (PH) is a complicated disease, which makes it especially fascinating how many of its problems can apparently be solved by someone who learned about it 45 seconds ago. Those of us living with PH spend an extraordinary amount of time managing our own bodies. We…
Pulmonary hypertension (PH) has changed what I consider an accomplishment — and maybe that isn’t such a bad thing. Living with PH has taught me that progress does not have to be dramatic to be worth celebrating. Walking a little farther, recovering a little faster, adjusting to a…
In a certain way, life with pulmonary hypertension (PH) can resemble a social media profile. What other people see may appear polished, remain private and guarded, or be raw and heavy — but it rarely reveals the whole story. A social media profile is not necessarily false simply because…
I live with pulmonary hypertension (PH), and I frequently ignore my own advice. As time goes on, those of us with PH become more in tune with our bodies and learn how to pace ourselves. We remember to take our medications as directed, manage fluid retention, and maintain…
At the Pulmonary Hypertension Association’s (PHA) biannual conference, it is easy to feel like you should be able to do more. There are sessions to attend, people to meet, dinners to join, and late-night moments you don’t want to miss. There is a kind of magic in being surrounded by…
I lived in a rural area at the time I was diagnosed with pulmonary hypertension (PH). I didn’t meet another PH patient for nearly a year, and even then, we didn’t get to chat because we were both bouncing from one appointment to another. That distance can make an…
I live with both idiopathic pulmonary hypertension (PH) and scleroderma, and earlier this month, I was taught a lesson in how quickly things can unravel when you’re with people who are well-versed in one condition while you’re dealing with symptoms of the other. I traveled to Washington, D.C., to…
I was recently in a pediatrician’s office when I noticed a sticker for Camp Bon Coeur, or “Camp Good Heart.” The camp is in my home state of Louisiana and serves children with heart conditions. It made me think about children with pulmonary hypertension (PH) who can benefit from…
Pulmonary hypertension (PH) is a serious and life-threatening disease. There was a time when the hardest part was simply staying alive, getting through each day, and not knowing what came next. But as my health has improved, the challenges have changed. The hardest part for me now isn’t survival.
I recently went to Washington, D.C., as part of the Pulmonary Hypertension Association’s (PHA) Capitol Hill Day to advocate for the pulmonary hypertension (PH) community and help secure co-sponsorship of the Supplemental Oxygen Access Reform Act (SOAR) and the Safe Step Act. The SOAR Act seeks to reform…
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