California Couple Shares Their PHenomenal Love Story

A woman driving home from work becomes severely short of breath and dizzy. She pulls over into a “No Parking” area, which draws the attention of a parking enforcement officer. He calls for help, and she is rushed to the hospital.

Five days and many tests later, doctors diagnose the woman with idiopathic pulmonary arterial hypertension (PAH), a rare and life-threatening condition.

Seventeen years after that, a man driving to work begins to cough uncontrollably, becomes dizzy, blacks out, and crashes into a parked car. He endures a series of tests at the hospital, and doctors also eventually diagnose him with PAH.

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Both patients become active leaders within the PH community, and three years after the man’s diagnosis, their paths cross at the Pulmonary Hypertension Association’s (PHA) International Conference in Orlando, Florida. The woman and the man become good friends, fall in love, get married, and now live a medically complicated but happy PAH life together.

No, this isn’t a Lifetime Original Movie, but it certainly has the potential to become one. It’s the real-life love story of Susie Alvarez, 59, and Perry Mamigonian, 61.

Perry and Susie graciously agreed to an interview via email. They hope you will find their story as interesting and inspiring as I do.

Susie Alvarez and Perry Mamigonian are all smiles at their Disney-themed wedding on May 26, 2018. (Courtesy of Susie Alvarez)

Diagnosis

Susie recalls having difficulties six months before her PAH diagnosis. In 1992, she was going through a difficult divorce, working full time, and attending evening college courses for working adults. She began to notice how tired she felt at the end of a workday, and keeping up with her college coursework had become a struggle.

In June of that year, she experienced the medical emergency while driving and received her shocking diagnosis days later. A pulmonologist advised Susie to go home and get her affairs in order because he predicted that she had about five years left to live.

Perry recalls experiencing shortness of breath while climbing a set of stairs several years before his diagnosis. His physician advised him to lose weight and exercise more.

But in early 2009, the year of his fateful car accident, Perry began to feel worse. He struggled with fatigue, weight gain, dizziness, and a chronic cough.

Treatments

For over 11 years, Susie was on continuous intravenous Flolan (epoprostenol GM). In 1996, she was placed on the United Network for Organ Sharing (UNOS) active transplant list. She experienced what is known in the transplant world as a “dry run,” in which patients are prepped for the possibility of receiving donated organs that are subsequently deemed unviable for transplant before the surgery proceeds.

Susie was then delisted from UNOS just over a year later because her Flolan therapy had lowered her lung pressure and improved her lung function. Now a 30-year PAH survivor, she says she is currently taking medications to treat three chemical pathways in the body and feels great.

The World Health Organization developed a system to place people with PAH into one of four functional classes of disease progression, based on symptoms triggered by everyday activities. Perry says he has experienced significant improvement. He stabilized within a year of starting therapy and dropped from the classification of Functional Class III severe to Functional Class II mild, where he remains today.

PH leadership

After years of attending PH support groups, Susie and Perry felt inspired to become support group leaders. Little did they know that their dedication to PH awareness and advocating for the community would lead them straight to romance.

It all started when they met at that PHA conference in 2012.

“Susie and I were leaders of two different California support groups,” Perry explained in an email. “We volunteered to help at the conference, and they assigned us to work together at registration. We struck up a friendly conversation and continued our friendship after returning home to California.”

Later that year, folks at PHA selected them to attend leadership training in Washington, D.C. This time they teamed up together to lobby congressional offices from their state.

“Our friendship grew stronger over the next year until I finally revealed to Susie that I wanted to be more than just friends,” Perry wrote. “We lived over 200 miles apart, though, so we began a long-distance relationship that led to our engagement in 2015.”

Love, marriage, and PH

Perry and Susie had the “PH discussion” when they were dating. Perry asked Susie if they wanted to start a serious relationship, knowing that their PH could take a turn for the worse at any moment. Susie’s response ‌convinced Perry how truly special she is: “Having PH is no reason to deny ourselves the things that make life special,” she said. “If anything, it’s a reason to embrace life even more.”

On May 26, 2018, the lifelong Disney fans married in a “Beauty and the Beast” themed wedding. Included in the wedding invitations was a beautiful quote from author N.R. Hart:

“Legend has it there is always a reason why souls meet. … The reasons they are brought together are no accident. Maybe she needed someone to show her how to live, and he needed someone to show him how to love.”

Perry and Susie now live in Fresno, California, where they dedicate their support and advocacy to each other.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.