Rose Jardim
When I was 50 years old, I cut myself while shaving my legs. And then the cut just didn’t heal. It developed into a deep ulcer that wouldn’t close. And then I got another one. And another.
I’ve worked as a hairstylist my whole life, so I was on my feet all day long. My doctor told me it was probably that plus water retention. So he gave me water pills. For eight years, this continued. I’d get more ulcers, and then my doctor would run a few tests and prescribe me water pills. The pills made me swell up like crazy, so my weight was always going up and down. One week I’d look like the Michelin Man, the next week I’d be wearing a size 10. That’s really hard on the mind.
My niece finally suggested I visit a massage therapist, just to get the blood circulating better in my legs. When I arrived, the masseuse took one look at me and said this wasn’t something they could fix. He sent me to the hospital.
At the ER, I passed out as soon as I walked through the doors. They told me that if I’d waited one more day before coming in, I probably would have died. The water had built up so much, I was drowning in it. It had damaged my heart, my lungs, my kidneys, and my liver. Everything. This is what happens when pulmonary arterial hypertension (PAH) goes undiagnosed and untreated.
I was told if I didn’t stay off my feet, I was going to lose my legs. I had to stop working, which was unthinkable to me. Being a hairstylist was my livelihood and the heart of my social life. It was my identity. I completely retreated from the world. I stopped wanting to see anyone. I spent a year in constant pain. I became a totally different person. It was an angry, terrible time.
I missed so much. I wasn’t cutting hair. I wasn’t seeing my old friends. I wasn’t meeting new people. My first grandchild had been born just before my diagnosis and I basically missed the whole first year of her life. I couldn’t be even a fraction of the grandma I’d wanted to be.
For PAH patients, the difference between one therapy and another can be night and day. And how a therapy is taken can also have a big impact on your life. I had to wear a pantsuit to my younger daughter’s wedding because the gown I would have preferred interfered with the device that administers my medication. All of that aside, things have been OK. But what pushes me forward is the hope that one day — sooner rather than later — things will get better. And, hopefully, when my granddaughter gets married one day, I’ll be able to pick a gown.
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