Our Journeys

Patient story

Jim Gebhardt

"You may not be a motorcyclist, but if there is something in your life that drives you, that excites you, that makes you want to face each new day, I encourage you to try to maintain that activity. Look for creative and effective ways to manage your PH and do not allow your PH to manage you."

- Jim Gebhardt

July 2011

My journey with pulmonary hypertension began in December 2003. At the time I was working as a government contractor, traveling to Africa several times a year. After consecutive flights from Kansas City to Atlanta, to New York City, and then to Johannesburg, I deplaned in Johannesburg International Airport. About 100 feet inside the terminal, I collapsed to the floor, unconscious. I had suffered a deep vein thrombosis (large blood clot) that had dislodged from my right calf into my chest and sprayed into both of my lungs as pulmonary emboli.

I survived that episode and returned to the United States just a few days later, to begin approximately six months of treatment and recovery. After a brief hospitalization, I began physical therapy and was placed on Coumadin® for life. During the ensuing months I was also diagnosed with obstructive sleep apnea and began using a continuous positive airway pressure (CPAP) machine at night. Although I never did return to the level of physical activity I had maintained prior to this episode, six months later we thought I had recovered. A computed tomography (CT) scan with medium was used to confirm the absence of visible emboli in both lungs.

Jim GebhardtSeveral years later, in July 2009, during the treadmill portion of a routine nuclear cardiac stress test, it was noted that I was de-saturating rapidly. The attending physician’s assistant stopped the test prematurely and thus began a four-month period of further diagnostic tests and physical examinations. In November, the diagnosis was confirmed: chronic thrombo-embolic pulmonary hypertension (CTEPH), at age 61 years, eight months. A subsequent trip to Thornton Hospital at University of California San Diego Medical Center confirmed this diagnosis and also the fact that my condition was inoperable due to the distal nature of the disease in both lungs.

I began taking Tracleer® in March 2010 and was switched to Letairis® in December 2010 after clear indications that Tracleer® was affecting my liver. While I can walk easily on level ground, stair climbing and carrying anything even as heavy as a bag of groceries causes pronounced shortness of breath. I can shovel snow and mow my grass with a walk-behind lawn mower if I am using supplemental oxygen. On a normal day, my saturation level is 92 at rest. I am still able to work as a military analyst for the US Army because my duties are largely sedentary and my air travel is limited.

One aspect of my life that I have been able to maintain is motorcycling. Riding motorcycles has been a part of my existence since about 1964. In addition to commuting to work daily by motorcycle throughout the year, for several years I have used my motorcycle for long-distance travel. In an affirmation of my strong desire to continue enjoying this aspect of my life, and with the support and encouragement of my wife of 41 years, over the past winter I began planning a long motorcycle road trip. I recruited three of my motorcycle buddies, ranging in age from 55 up to 66, to participate in this adventure with me, but they largely left the trip planning to me. One of my friends did suggest that we go as far north and west as Washington, Oregon, and California.

Jim GebhardtWe live in eastern Kansas, where the elevation is about 920 feet above sea level. Between us and those three Western states are several mountain ranges and passes, with roads as high as nearly 11,000 feet above sea level. Undeterred, I began planning, looking for scenic roads that any motorcyclist would want to ride between Kansas and California. The route I eventually selected would take us diagonally across central Nebraska; through Casper and Cody, Wyoming; up Chief Joseph Highway and the Beartooth Highway, both acclaimed scenic routes, and over Beartooth Pass (10,947 feet); across the Continental Divide just west of Helena, MT; then through Lolo Pass to Lewiston, ID; across the southeastern corner of Washington to Walla Walla; down the entire north–south length of eastern Oregon; into the northeastern tip of California; across Nevada on “The Loneliest Road in America” (US 50); across central and northern Utah; through the mountains of northern Colorado, where we re-crossed the Continental Divide, over Cameron Pass (10,276 feet); and back onto the Great Plains to eastern Kansas. In all, the route covered almost 4,100 miles in 11 states, and we planned to drive it in 9 days, averaging 455 miles per day.

In addition to the normal considerations for such a journey by motorcycle—where to buy gas, eat, and sleep, I had to take into account the elevation of the terrain on which we intended to ride. Essentially, I needed to use supplemental oxygen at any elevation above 7,000 feet. In addition to the two very high passes already mentioned, there were several other areas, in Utah and Colorado in particular, that would require the use of oxygen. I calculated that I would need at least four bottles in all, and after consultation with my oxygen supplier decided to carry six. These fit neatly, along with a small backpack, regulator, and cannula, into a bag that I strapped to the tailpiece of my motorcycle. On the seat behind me was my CPAP machine, and in my tank bag I had my pulse oximeter to make frequent checks of my saturation level. I packed all my normal medications for 10 days and took along my entire 30-day supply of Letairis® capsules.

Jim Gebhardt“Approval” would not be the appropriate term to describe the reaction of either my pulmonary physician or my Coumadin manager to this adventure. Both questioned me in depth to ensure I understood the risks involved, both in motorcycle travel in general, and specifically regarding travel at high elevations. In the end, I convinced them that I had weighed the risks and taken all possible measures to mitigate them.

Seeking to take advantage of this opportunity to inform others regarding PH, I cajoled a local newspaper reporter into writing a story about our upcoming travel, and I also obtained a stack of PH symptom-themed business cards from PHA for distribution to fellow travelers.

We successfully completed our motorcycle trip from 10–18 June of this year. In spite of relatively cold temperatures (40–45 degrees in the mornings), and rain on six of nine riding days, we had a great time and saw a lot of beautiful scenery. We averaged about 10 hours of seat time on our motorcycles each day. While engaging in conversations with other travelers and local residents at gas stations, restaurants, and motels, I handed out about 30 PH symptom cards to total strangers. My main message to them was, “Don’t put off until next year the trip that you could be making this year.”

Highway in the mountainsHow did I manage my supplementary oxygen? Through careful map study and by use of the Internet to obtain elevation data, I identified those places where I needed to “bottle up.” I instructed my traveling companions in how to open and close the bottle valve and how to adjust the regulator setting between “2” and “3”. The night before we intended to travel to an elevation requiring oxygen, I prepared my bottle and backpack, and the next day I wore the backpack with the cannula extending from it under my motorcycle helmet. When we stopped at the side of the road, one of my riding buddies walked over to my motorcycle and opened the valve on my bottle. An hour or two later, depending on elevation and consumption rate, I replaced the empty bottle with a full bottle from the storage bag on the back of my motorcycle. When the road descended to a safe altitude, we stopped on the shoulder, and I shut off the bottle and placed the entire backpack in the storage bag.

Following this routine, and periodically using my pulse oximeter to ensure I was adequately saturated, we negotiated the two high passes in Wyoming and Colorado and several other areas of high elevation. I returned to relatively low and flat Kansas with two unopened bottles of oxygen and feeling great about the motorcycle ride and about myself. After this experience, I know there will be other long motorcycle rides ahead. I’m already thinking about visiting the Michigan Upper Peninsula and driving across the Mackinac Bridge (five miles long, 500 feet above the water in the middle). In spite of PH, I am determined to continue a physical activity that has been a central part of my existence for almost 50 years.

You may not be a motorcyclist, but if there is something in your life that drives you, that excites you, that makes you want to face each new day, I encourage you to try to maintain that activity. Look for creative and effective ways to manage your PH and do not allow your PH to manage you.



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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.