Flexible care puts pulmonary hypertension patient back on the snow

March 1, 2018
While skiing near Telluride, Jonathan Greenspan enjoys magestic mountain views.
With a big assist from UCHealth, Jonathan Greenspan enjoys views like these more than 100 ski days a season. (Courtesy Jonathan Greenspan).

If it’s winter in Colorado and someone asks how many days you’ve gotten, the answer is automatic. You do a quick mental tally of the times you’ve been up skiing or snowboarding and share the number. Anything over about a dozen is pretty good. Thirty days is impressive; twice that, epic. Rarely is it much higher.

Jonathan Greenspan, 55, gets 115 days or more, depending on the year. Were it not for the team at the UCHealth Pulmonary Vascular Disease Clinic – Anschutz Medical Campus, that number would be zero, because Greenspan would be, as he put it, “a pile of ashes by now.”

A short commute to the slopes helps: Greenspan lives 150 yards from a ski lift in Telluride. The downside is that it put him 67 miles away from the nearest hospital, in Montrose. That was a problem when his health started to mysteriously crater four years back.

Pulmonary arterial hypertension

He had never spent much time in in the health care system, besides when he got hip replacements after years as a ski instructor, hiker, biker and runner wore the originals down. True, the duties and desk work of running his business of more than 50 employees – it handled the recycling for Telluride, Montrose and other nearby towns, among other activities – had added a few pounds to what had been a 5’5”, 150-pound frame. But he was healthy, and he was a single guy who tended to just gut it out when he was under the weather.

Jonathan Greenspan skis beautiful terrain, with snow-capped peaks in the background, near Telluride.
New pulmonary hypertension medications have helped Greenspan get out and enjoy days like this. (Courtesy Jonathan Greenspan).

That would change. A flu left him bedridden for a solid week. It was during ski season. When he recovered, he was having to stop every 10 yards on the walk to the ski lift.

“I was huffing and puffing and thinking, ‘What’s going on here?’” Greenspan recalled. “Because I didn’t frequent doctors very much, I tried to brush it off.”

His lips and face swelled, which he brushed off, too, as he did the added weight – around 50 pounds of it. This went on for more than two years, until he blacked out on his stairs and woke up in a pool of blood from a nasty cut on his head, brushed that off, and then blacked out again a week later. Finally, in the summer of 2014, he went to the clinic in Telluride. They sent him the hospital in Montrose.

Seriousness of pulmonary arterial hypertension

The doctors there ran tests and put him on a diuretic; he lost nine pounds overnight. Greenspan had severe pulmonary arterial hypertension, they told him. It was serious enough that they were, they told him, “not positioned to treat it at this hospital.”

Pulmonary arterial hypertension happens when the lungs put the squeeze on blood flow coming from the heart. It’s often from the narrowing of blood vessels due to inflammation or other causes. That strains the right side of the heart, which then has to work harder to pump blood to the lungs. The symptoms were familiar enough to Greenspan: shortness of breath, fatigue, dizziness, fainting spells, and edema-caused swelling. The too-frequent end game – heart failure – was news to him.

The team in Montrose referred Greenspan to UCH’s Pulmonary Vascular Disease Center. It’s part of UCHealth’s Comprehensive Lung and Breathing Program, U.S. News & World Report’s top-ranked pulmonology program in 2017-2018. The Pulmonary Vascular Disease Center is the only Pulmonary Hypertension Association-accredited Center of Comprehensive Care in the region. The center’s team of eight specialist MDs and 10 nurses earned that accreditation through a proven ability to diagnose and care for complex pulmonary hypertension cases such as Greenspan’s.

Todd Bull, MD, and Pulmonary Fellow Jeffrey Robinson, MD, took the lead in Greenspan’s care. They discovered that the right side of his heart had dilated dangerously as it worked to shove blood into uncooperative lungs. This was a life-threatening illness, they told him. Fortunately, thanks to the emergence of new medications over the past several years, they had options. The strongest of them, while life-saving, are difficult to use. They must be administered continuously through the bloodstream, 24 hours a day, via a portable pump.

No pump

Jonathan Greenspan carries his skis, headed higher than a lift will take him.
Greenspan, headed higher than a lift will take him, shoulders his skis for a climb to the steeps. (Courtesy Jonathan Greenspan).

Greenspan didn’t want a pump any more than he wanted to move out of Telluride to lower, better oxygenated quarters. The UCHealth team told him that would be a good idea, too, but, as Bull put it, “Moving away from your support base is problematic for many people, so we try to work with individuals like Jonathan and come up with a plan where they can remain in the community they love.”

The IV medication pump, though, was a recommendation Bull and colleagues felt strongly about. No one wants a pump. But pumps can dispense high doses continuously and directly to the blood vessels in the heart and lungs that need it. They save lives. It could save Greenspan’s life.

Greenspan resisted. The UCHealth team made it clear that he was taking a huge risk. But Bull and colleagues also recognized that in a patient-centered care model, Greenspan the patient had an important voice. It was he, after all, who would live with the consequences of their collective care decisions.

He had been staying with friends in metro Denver during his care at UCHealth University of Colorado Hospital (UCH). He returned to Telluride, “kicking stones and dirt and not sharing with my friends,” as he put it. He walked with a cane. He had no energy. He finally confided his predicament in a close friend who works in the medical industry. The friend told him to get back to UCH.

Greenspan told Bull and Robinson he still didn’t want the pump. That left oral medications as the only options. In a case as severe as his, they’re often not enough, they told him.

“I’m going to take my chances,” Greenspan said.

Bull, wanting to improve those chances, also enrolled Greenspan in a multi-center pulmonary arterial hypertension clinical trial in which the Pulmonary Vascular Disease Center was a study site. It was for an oral medication designed to reduce lung inflammation, open up blood vessels and improve flow.

Back to life

At first, the medications didn’t seem to do much for him. Feeling no better, he spent much of a vacation with family in South Carolina on the couch as they were out boating and sea kayaking and fishing and hot tubbing. “I can’t do any of that stuff anymore,” he was thinking.

Then early one morning he went to the complex’s gym. He pedaled a stationery bike for 5 minutes. The next day, he did 10 minutes, and 15 minutes the day after that. Maybe it was because he was at sea level, but he definitely felt stronger. He called the UCH team, who gave him their blessing to keep exercising.

Two years later, Greenspan is up and working out for 55 minutes before 5 a.m. every day, he said. The combination of medications, diet and exercise helped him shed 75 pounds. He’s back to his “welterweight fighting weight,” as he put it.

A slope's-eye view of the town of Telluride.
A slope’s-eye view of the town of Telluride. Altitude can be a problem for those with pulmonary hypertension; this sort of natural beauty and, more importantly, deep connections in the community made leaving a nonstarter for Greenspan; his UCHealth doctors respected (Courtesy Jonathan Greenspan).

There are still challenges. He had to close his company’s doors. He’s starting up again, professionally, doing resource-recovery consulting, working security at the Telluride Ski Resort,  selling real estate. “I know myself, he said. “I’ll come back.”

In one important way, he’s already back. He’s on track for 120 days of skiing despite this season’s thin snowpack.

Oral medications and lifestyle changes were enough to turn Greenspan’s health around. “It turned out he ended up being right,” Bull said. “We’ve gotten away with orals.”

Greenspan recognizes how much Bull and his colleagues have done for him.

“The biggest thing I appreciate is how UCHealth handled it and turned my life around in every aspect. I’m not trying to make a commercial for them, but they just blew it away. Dr. Bull was very central and involved in every single way,” Greenspan said.

From the beginning, the Pulmonary Vascular Disease Center team told him their job was to restore his lifestyle, he added.

“And guess what they did? They restored it.”

About the author

Todd Neff has written hundreds of stories for University of Colorado Hospital and UCHealth. He covered science and the environment for the Daily Camera in Boulder, Colorado, and has taught narrative nonfiction at the University of Colorado, where he was a Ted Scripps Fellowship recipient in Environmental Journalism. He is author of “A Beard Cut Short,” a biography of a remarkable professor; “The Laser That’s Changing the World,” a history of lidar; and “From Jars to the Stars,” a history of Ball Aerospace.