30 Days of PH: How PH Prepared Me For Another Medical Challenge

Perry Mamigonian with his wife, Susie Alvarez (Photo courtesy of Perry Mamigonian)

Day 2 of 30

This is Perry Mamigonian’s story:

After living with PH for over 10 years, I guess I was lulled into a false sense of security that nothing worse could happen. Then in 2019, I began experiencing symptoms I attributed to PH, but a series of cardio-pulmonary tests showed my PH was stable. After a discussion, my primary care doctor ordered an endocrine test, which revealed severely impaired function. He sent me to an endocrinologist, who ordered an MRI. A few days before that Christmas, she called to tell me the scan revealed a large tumor on my pituitary gland’s frontal lobe.  Fortunately the tumor was benign, but it had grown to surround the gland and press on my optic nerves.

I should have been fearful but remained calm. My first question: “What’s the next step?” I would need neurosurgery in Los Angeles or San Francisco, not in my hometown. Choosing the best facility meant having the best care, both for the surgery and in managing my PH.  My experience of living with PH taught me how to research trusted sources and to be an active participant in my care: taking my doctors’ advice but asking good, informed questions. Together, my PH doctor, endocrinologist, and the surgical and PH teams at Cedars-Sinai worked to determine my best plan.

My surgery was scheduled for March 2020, but COVID hit and the hospital went into lockdown. I waited for over three months before a window of opportunity opened. If anything, PH has taught me patience. My wife, Susie, and I rushed to Los Angeles, where I spent two weeks in the hospital undergoing two neurosurgeries. Hospital visits were limited to one person a day. Susie was by my side every day, and I don’t think I could have made it through without her.

My recovery was difficult, but PH also taught me to face challenges in ways I was ill-prepared for when diagnosed in 2009. I hope no one with PH has to experience other health problems. If so, may they also find that living with PH helps in meeting any challenge life throws at us.

Pulmonary Hypertension News’ 30 Days of PH campaign will publish one story per day for PH Awareness Month in November. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPH, or read the full series.