OUR JOURNEYS

Patient story

Patti Mathias

"Since approximately 1996, I'd been trying to figure out why I had a constant dry cough (feeling like there was a pool of something in my throat) and constant sinus drainage."

You know those warning labels that say, "If you have a cough for more than 7 days, go see your doctor,"? Well, I did see my MD. Since approximately 1996, I'd been trying to figure out why I had a constant dry cough (feeling like there was a pool of something in my throat) & constant sinus drainage. I had moved from Michigan to Colorado so figured the high altitude had something to do with it. I kept getting treatment for possible asthma or allergies. For 15 years I chased this diagnosis to no avail. In 2007, at age 40, I became pregnant with my first/last child. He was premature by 6 weeks, but is gloriously fine. However, preeclampsia caused me to go in for a C-section, and I subsequently developed two nasty infections causing me to be on a wound-vac for the first three months after he was born. I never really have regained my strength since then.

I continued to have more and more problems with exertion and breathing and a cough that made it sound like I had tuberculosis! Also, something I haven't seen people mention, I kept feeling this enormous pressure that started down in my lung/back area that crawled up into my head w/exertion, and it made me extremely afraid. I finally changed my PPO insurance and came into the HMO insurance provider I'd worked for for 11 years. In less than ten months, I had my full diagnosis and am just starting treatment. It's Severe PH, and my pressure is 91. I was told that if they hadn't caught it, I'd likely be dead in two years. I was simultaneously on a list for gastric-bypass, but thanks to our GOD, found out my PH diagnosis before I went through with the surgery, or I would most likely be dead now.

I'm not out of the woods yet. I won't be starting the Letairis 'til Oct. 29, and so far I am not feeling the benefit of the Adcirca, but I am hopeful. What else can I do? Got to keep powering on.

My son will be 5 years old next month. I don't want him to lose his momma. What do you remember about your momma when you were four? I'm scared when I think about that. But, I look back, and I can see GOD's sovereign, merciful hand, bringing me to this new discovery. HE's in control, and I'm so glad. My faith has been increased, not decreased. I'm blessed every day God allows me to wake up, take a shower, go to work, but most importantly, see my son's beautiful face and kiss him and hear him say, “I love you, Momma.” My husband is a rock. I'm worthless, physically, to really do much around the house and my husband is taking the brunt, but he's my great love. So, thank you, GOD. And thank you, my husband, Dr. Martin, Dr. Wilkins, and Dr. Lang and staff.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.