Breathing anew after a rare diagnosis

John Morthanos overcomes IPF

John Morthanos

John Morthanos, a 64-year-old longtime Stratford resident, believed he was in good health until one afternoon when he was 50; he thought he was having a heart attack. The consumer magazine marketing consultant would spend the next decade searching for the correct diagnosis — idiopathic pulmonary fibrosis, or IPF, a rare and debilitating disease.

It all started in 2000 when Morthanos had trouble breathing while shopping.

“I really felt out of sorts,” Morthanos said. “Light-headed and I was having chest pains. My wife took me to Milford Hospital. The emergency room doctor said my heart was fine but that he saw something in the X-ray and that I should follow up with my doctor; something was worrying him.”

That initial doctor’s concern registered enough that when Morthanos’s regular doctor “poo-pooed” the idea, he knew he needed to find a new doctor.

Just one week later, the emergency room doctor followed up to find out why Morthanos hadn’t had a CAT scan yet. His insurance company was supportive and proactive, helping him to make the switch to a new GP who agreed that something was going on. Morthanos began a 10-year odyssey of visits to specialists.

“No one really looked at the pulmonary aspect. When I would walk, my fingertips would turn white and tingle,” Morthanos said.

Finally, a biopsy, which would later turn out to be non-procedural, was performed. It showed only mild fibrotic material. This pulmonologist concluded Morthanos’s problem was that he was obese and allergic to cats.

By the time Morthanos turned 61, he was having more and more trouble breathing at his high-pressure job; dealing with his illness was becoming its own full-time job.

“My life was a series of excuses. I couldn’t let anyone know I was sick because I was responsible for too much,” Morthanos said.

After being downsized, which turned out to be the best thing that ever happened to him, he went to another new doctor, who ran him through a complete blood function and heart exam called a nuclear stress test, which again showed a strong heart.

“But then why can’t I breathe?” Morthanos asked the doctor.

This doctor listened and sent him to Yale’s Winchester Chest Clinic, which finally came up with an accurate diagnosis — idiopathic pulmonary fibrosis, or IPF, a rare and debilitating disease, which is still a relatively unheard of disease.

“No, doctor! I’m fat and I’m allergic to cats!” Morthanos recalled saying.

Morthanos and his wife, Paula, learned that there is no FDA-approved treatment for IPF. A lung transplant is an extremely rare treatment option that can improve life with the condition, but isn’t necessarily a cure for the disease. Although IPF is the leading reason for lung transplants, the procedure remains uncommon because patients are either too old, too ill or don’t survive long enough to undergo the procedure.

Dr. Erica Herzog of Yale University immediately put Morthanos on oxygen therapy, which meant wearing the mask to bed at night and carrying a tank around with him wherever he went.

“I had to deal with coping with needing oxygen as a man. I had a tube up my nose,” Morthanos said. “People look at you and wonder, ‘Is this person dying?’”

Morthanos also learned that without the lung transplant, he would probably die in two to three years. Fortunately, he recalls, his wife never registered what had been said.

“She didn’t realize it until just last month when I was on a radio show and mentioned it,” Morthanos said. “She hadn’t realized if I didn’t get the lung transplant, there was a ‘use by’ date stamped on my forehead.”

This was now March 2011 and after a review of Morthanos’s previous records there was the realization that if his previous biopsy had been done correctly, he might have been diagnosed four years earlier and had a better chance at slowing the progression of the disease.

“I resolved to stay as healthy as I could. I didn’t think about death so much, but I changed my perception about a lot of things,” he said. “I stopped buying stuff. Why have a closet full of stuff I might never open?”

Morthanos began a pulmonary rehabilitation program at Bridgeport Hospital. His rehab specialist, Gretchen May-Fendo, made observations of his oxygen requirements while walking on the treadmill, and doctors were able to see that Morthanos was in worse condition than they had realized.

This was July 2012. The function in his left lung had dropped below 15% efficiency, but his heart was still strong, so he was eligible for the active list for a new lung.

Morthanos was signed up for the New York Presbyterian Hospital lung transplant program, headed by Dr. Selim Arcasoy. Before being accepted into the program, there were requirements: Medical tests had to be redone and Morthanos had to attend monthly seminars with surgeons and post-transplant patients and meetings with nutritionists.

On his third visit for a possible match, they had success. When Morthanos woke up three days after the operation, the doctors were pleased. His muscle development was good. His legs were strong enough. After a few medical road bumps, Morthanos was back home and recuperating.

Morthanos recently participated in a walkathon and is moving well toward recovery. He just had his last day of physical rehab. He still needs to work out every day and be as mobile as possible, and he is on a 35-pill-a-day regimen to prevent his body from rejecting the new lung.

“It feels like 1982, except I’m not wearing paisley,” Morthanos said. “My wife has been there all along. I realized one of my biggest concerns was not being around for doing simple things, like not being able to bring the garbage to curb.”

The greatest change Morthanos has made in his life is becoming a germaphobe, because his immune system is so low.

“Really? I’m just grateful that I’ve got this second chance again,” he said. “I’m hoping to be able to provide help to others. And maybe I’m not quite so cynical as before.”

Morthanos is now focused on raising awareness about IPF so others can avoid the struggles he faced. Patients with IPF often experience exercise-induced shortness of breath and chronic dry cough. Other symptoms of IPF may include fatigue and weakness, chest discomfort, loss of appetite, and rapid weight loss.

Since about 60% of patients with IPF die from the disease within two to five years of diagnosis, it is important to be alert to any symptoms.

“Don’t look at the Internet; you’ll get confused,” Morthanos said. “Get to a pulmonologist. As a patient, ask questions of your doctor. Be sure that you have a doctor that listens. So many doctors don’t know about IPF because it’s rare. And if your doctor says there’s nothing he or she can do … do me a favor, go to Yale. And if you are lucky enough to be part of a program, make sure you do what they tell you.”

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