Adele Suydam, 77, and her husband Bob, 81, live by a motto: “As much as we can, as fast as we can.”
During Bob’s career as a petroleum geologist, they moved a lot (to the point that they lived in Denver four different times), raising a son and a daughter along the way. In retirement, they settled in Grand Junction. But they kept moving – now on their own terms, to some of the world’s most interesting and beautiful places. Adele and Bob Suydam loved to travel, and travel they did.
During travels in 2012, a health scare threatened their globetrotting ways. It ultimately led them to the Comprehensive Lung and Breathing Program at UCHealth University of Colorado Hospital’s Anschutz Medical Campus.
They had hiked around Machu Picchu and returned to Cusco, Peru, the nearby city whose 11,000-foot elevation is 3,000 feet higher than that of the UNESCO World Heritage Site. That night in the hotel room, “I just cratered,” Adele said.
At the Cusco hospital, her oxygen saturation meter read 56 percent, dangerously low. They stabilized her, flew her to a hospital at sea level in Lima, stabilized her so she could fly home to Grand Junction.
A pulmonologist there kept an eye on her. She seemed by and large back to normal. Perhaps it had been the altitude. Except that, for the next couple of years, “she had odd things happen,” as Bob put it. “The best term would be ‘spells.’”
In and out
One involved Adele fainting while working out on a thigh adductor machine at a local gym.
“We had to pry her out of there,” Bob said.
Another time, she fainted in the passenger seat as Bob drove.
“She fell face-forward against the dashboard and the window,” he said.
By 2015, these spells happened often enough that Adele and Bob decided she shouldn’t be driving. Still, they managed to travel – that year, to Patagonia and the Chilean fjords. But it was growing more difficult, and she noticed her energy starting to flag. Their travel plans were looking increasingly imperiled by Adele’s declining health.
Adele was convinced she had a heart problem and just needed a pacemaker. Her cardiologist agreed about the heart, but not about the pacemaker. He suspected pulmonary hypertension. The disease has many causes that can be hard to pin down. The effects are more obvious: constricted or impeded blood vessels in the lungs increase blood pressure in the lung’s arteries. That makes it harder for the right side of the heart to pump blood through them, which in turn can slow down circulation to the body and leave one oxygen-starved to that point that one faints on a thigh adductor machine.
Adele’s case was curious. She was healthy enough to stay active and to travel to the southern tip of South America. But then the lights would go out. Her cardiologist steered her to the Comprehensive Lung and Breathing Program, where she met with UCHealth Pulmonologist Dr. James Maloney.
Adele underwent several tests, including CT and VQ (lung ventilation and perfusion) scans. Maloney’s colleague Dr. Todd Bull performed a catheterization via a vein in her neck to explore the state of her heart and major lung arteries. The heart is of particular concern with pulmonary hypertension patients, Bull said, because “how you do depends on how your heart responds to those high pressures.” Adele’s medical history came into play, too. Maloney learned that she had been hospitalized with blood clots in her left leg in the mid-1990s, and that, as early as 2006, she had struggled to breathe during a trip to Alaska. A lung scan soon thereafter had found scores of small blood clots throughout her lungs. On the scan, Adele said, they looked like a starry night.
Taken together, Maloney and Bull concluded that Adele had a form of pulmonary hypertension called chronic thromboembolic pulmonary hypertension, or CTEPH. Those blood clots in Adele’s lungs were at the root of it. Over time, the clots or scar tissue that formed over them partially or completely blocked blood flow.
But CTEPH is about more than blockages, Maloney said. The arteries themselves undergo changes that hamper their ability to expand and contract when the body needs them to. Most of us use perhaps half our lung capacity as we go about our daily routines, he said. During exercise, for example, lung arteries open wider to make room for the rush of blood needed to sustain the body’s increased demand for oxygen (as well as its need to get rid of more carbon dioxide). With CTEPH, the cellular signaling that triggers that arterial relaxation stops working properly. The arteries are not only physically blocked, but also chemically faulty, which leads them to stay narrower than they should.
Addressing pulmonary hypertension
In Adele’s case, Maloney and Bull found fewer actual blockages than they expected and – good news – lower arterial pressures than anticipated. Her lung arteries had, however, largely stopped dilating in response to exercise and other environmental cues. The chemical outweighed the physical in her case of CTEPH.
In hindsight, all this seems quite straightforward. But Adele’s was a tricky diagnosis. Getting it right took an experienced, multidisciplinary team seasoned by thousands of cases, including many referrals from doctors like Adele’s in Grand Junction – enough that even rare cases like hers become familiar.
A surgery called a pulmonary thromboendarterectomy was an option. This would physically remove clots and scar tissue in a procedure, Bull said, can last eight to 10 hours. But given the nature of Adele’s disease, Maloney and Bull suggested an alternative: a drug called Adempas. It works by getting lung arteries to relax through a chemical pathway that sidesteps the one her body has stopped responding too. Adele took it three times a day starting in November 2015.
It worked. In 2016, the Suydams did the Rhine-Moselle cruise in Germany and a tour of Morocco involving, as Bob put it, “lots of physical activity,” including a camel ride she couldn’t have done a year before. They also took the youngest of their three grandchildren to Italy to mark his high school graduation, which involved 12 days with lots of walking. In 2017 they kayaked in the Panama Canal, cruised about the United Kingdom, and explored British Columbia. This year involved lots of hiking in Costa Rica and a planned jaunt to the Adriatic Sea’s Dalmatian Coast. In 2019, Italy and Switzerland are on the docket, to be followed in 2020 by a trip from Lisbon, Portugal to Barcelona, Spain. They’ll be married 60 years at that point, and with Adele’s CTEPH under control, they have no intention of slowing down.
“We have found out that the so-called ‘bucket list’ never gets shorter,” Bob said.
Adele said she’s grateful for the care she’s received – with one caveat.
“I just wish I had gone to UCHealth years before,” she said.