One Woman’s Symptoms Lead to Rare Diagnosis

She has pulmonary hypertension, which causes the blood vessels of the lungs to shrink

FARGO, N.D. — One woman received a rare diagnosis after months of experiencing unexplained symptoms.

Shari Hagen–Oxton says she always felt out of breath a year ago.

“Even just letting the dog out in the morning, walking from one end of the house I’d have to sit down,” she said.

She had other symptoms like stomach issues and swelling of her hands, and eventually had her gallbladder removed.

But that wasn’t the only problem she had.

“It was weird, because I thought was having a simple gallbladder thing and it kept getting more severe. So it was scary and a lot to take in at the time. It was overwhelming,” she said.

It turns out she has pulmonary arterial hypertension, or PAH.

It’s a disease where the blood vessels of the lungs shrink, so blood can’t flow from the heart to the lungs.

“Dr. Al Maluli came in and said, ‘do you have this going on, this going on?’ and I was like, ‘yes, that’s everything I’ve been telling everybody,'” she said.

Her doctor, Hayan Al Maluli, says PAH is a rare disease that many doctors aren’t familiar with.

“Usually it takes about three years of visits to several doctors for the disease to be finally diagnosed correctly,” he said.

The cause of PAH is unknown, but it is manageable with medication.

Hagen-Oxton has a pump that’s always connected to her body.

“You wouldn’t think it’d be a big deal, because it’s so small, but it gets to be so painful,” she said.

Al Maluli says people usually respond well to the medication.

“We see [PAH] in younger ladies who are otherwise very healthy… the good part is they have very good tolerance,” he said.

Al Maluli says if you have symptoms like Hagen-Oxton had, it’s worth asking your doctor about PAH.

“If you’re short of breath, especially if you’re younger, you don’t have many reasons to be short of breath, and you keep going to your doctors and no one seems to know what’s going on, maybe ask your doctor [about PAH],” he said.

Now, luckily Shari is feeling much better than she did a year ago.

If left untreated, PAH could eventually lead to heart failure.