Years of Misdiagnosis: Tiffany Ray

February 13,2020

I was diagnosed with PH after years of misdiagnosis.

When my symptoms started, I was sent to a psychologist for anxiety and put on multiple medications I didn’t need. Then, I broke my hand in September of 2018 bringing in groceries. At the time I was a registered nurse and had been working full time for more than 15 years. My hand was put in a cast and I was told to take it easy for the six week healing time. At my next check up, my hand wasn’t healing (it was my dominant hand), and I was told to stop using it altogether to allow for healing. I tried to be a good patient. I sat on the couch, hand on pillows, elevated at all times.

About a week later I experienced sudden chest pain and shortness of breath, and I knew something was terribly wrong. I rushed to the emergency room and was immediately admitted to the cardiopulmonary unit. I was told I had a heart condition and that only a cardiac catheterization procedure could diagnose me. I had more than 15 pounds of fluid retained in my lungs and around my heart. The cardiac cath showed pulmonary hypertension and I was referred to University of Utah to a specialist at the pulmonary hypertension clinic.

Since then my life has been forever altered. I must wear oxygen, take handfuls of pills, and I see doctors constantly. I am still adjusting to the new normal that is my everyday life. I am on social security disability now, as I can’t work. I stay home most days. The symptoms range from irritating to devastating. I have good and bad days. But I am so grateful for the good days.

I am thankful for the kindness of groups like Team PHenomenal Hope for giving patients not only desperately needed financial help, but to raise awareness for this debilitating, progressive disease. I have to take trips to Utah often to see my doctors and just the gas money alone can make me miss necessary appointments and tests. I have dental work that needs done, a simple filling, that I can’t afford as it would mean I would be scrambling to make ends meet with grocery money and utilities.

I hope programs like Team PHenomenal Hope’s Unmet Needs Fund continue through the generosity of strangers as they are making a huge difference in our lives. I only hope one day I can pay it forward and be the person to help someone through the kindness of my heart.

Tiffany is a recipient of the Team PHenomenal Hope Unmet Needs Patient Impact Fund. Learn more about how this fund supports PH patients at teamph.org/unmetneeds.

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