Misdiagnosed: Becky Mack’s PH Story

July 02,2019

I have asthma. Nope. I have bronchitis. Nope. I’m out of shape. Nope. I just need to exercise more. Nope.

As is often the case, I spent most of my life being wrongly diagnosed. I had a mitral valve replacement in 2000, with a brand new titanium valve. We thought that would do it. Nope.

Life went on, my husband and I continued raising our three boys. I slowly continued to run out of steam. In 2015 my husband died rather rapidly from pancreatic cancer. I had spent the previous year caring for him, and not caring for myself. Two months after his death, it was time to face facts. I, myself, was sick. I went to my cardiologist with my complaints. He gave me my annual tests, saw something amiss, and said he was sending me down the hall to a pulmonologist. That’s when the whirlwind began.

The pulmonologist, that very day, examined me, listened to my lungs, and declared, “Those are the clearest lungs I’ve heard all day. I suspect something else, something more serious, is going on. I’m sending you to a colleague at UCSD.”

I called and the PH specialist there, said, “OK, show up Tuesday morning and pack a bag. I’m betting we won’t send you home right away.” Just like that, it began. My son took me for the appointment, and was with me during my right heart catheterization. Options for subq pumps were offered, information was given, and I was admitted. My son was researching something called pulmonary arterial hypertension, and I was given a Sub-Q pump for Remodulin. Boom! I’m a patient with PAH, in addition to being a new widow.

It’s been a whirlwind, to say the least. The support from the PH community both online and in real life with our support group here in San Diego has been what has kept me going. My grounding and constant has been my quilting. I’ve been sewing my whole life, as I took up quilting about 25 years ago. That explains the old Singer, which I still use, and all the fabric in my home! I am a recipient of the Team PH Unmet Needs Patient Impact Fund, and this grant will help me with so many things. Transportation and meals especially. Thank you, Team PHenomenal Hope!

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