How One Woman’s Business Skills Have Helped Her Manage PAH

Unless you live with a chronic illness or care for someone who does, it isn’t easy to wrap your head around how much time it takes to manage a disease. A few months ago, I asked members of our Pulmonary Hypertension News Forums, “What makes your health a full-time job? What aspect of your PH takes the most time to manage?”

The comments were interesting and diverse, but all agreed that managing pulmonary hypertension often feels like a full-time job.

One PHriend and forum member, Carol Volckmann, had an interesting perspective:

“I retired early from my career — I was 55 and ready for being [young] enough to now have a life of traveling, sailing long trips, skiing, volunteering, just enjoying all the adventures [my husband] Dick and I wanted to embark on and not having time restraints.

A couple years later, I was diagnosed with PAH caused by scleroderma. I was no longer retired! We both now had a new career — managers of these chronic lifetime diseases. We became partners in this new corporate disease world.”

Carol’s phrase “partners in this new corporate disease world” caught my attention, so I reached out to her via email to learn more about her story and how she’s managed her rare diseases.

When Carol was diagnosed with pulmonary arterial hypertension (PAH) in 2003, doctors said she had three to five years to live. She told me, “Neither of us believed them [so we] started our due diligence investigation.” Carol had worked in business for many years, and it was the skills she developed throughout her career that ultimately helped her find quality care and manage her illnesses.

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She and her husband, Dick, researched specialists at the Mayo Clinic and the Cleveland Clinic. But then they came across Dr. Rajan Saggar, a pulmonologist at the University of California, Los Angeles, who specializes in PAH and scleroderma. This was their sign. However, because they lived in Washington state, becoming a patient at UCLA was complicated and required many hours on the phone.

Tenacity to accomplish goals

To accomplish this task, Carol said she made friends with the “gatekeeper” on the other end of the phone. She continues to make friends with medical professionals and the schedulers at her specialty pharmacy. Having these relationships certainly helps things go a bit more smoothly, just like in the business world.

Three months later, she met with Dr. Saggar and a rheumatologist at UCLA. After Carol completed all the tests, including a right heart catheterization to measure the pressure in her heart and lungs, Dr. Saggar told her that if she were his mom, he would treat her aggressively. Carol jokingly asked him how much he liked his mom.

She began taking Remodulin (treprostinil) via a subcutaneous pump, which worked well. She could continue her favorite activities of swimming, sailing, and snorkeling, while taking off the pump for a few hours each time. Dick and Carol learned together how to manage and prepare the medication. Dick was the mixologist, and Carol would set everything up and keep extra cassettes in the refrigerator.

Making adjustments

The bad news was that her pump was excruciating. After some time, Dr. Saggar referred Carol to a PH specialist in Washington who transitioned her to a Hickman line so she could receive intravenous Remodulin. The treatment was no longer painful, but the downfall was that she couldn’t swim unless she wore a dry suit.

Dick and Carol found new hobbies, bought a motor home, and traveled around the country for over a year. But how would she get her supplies and medications while traveling? Once again, she put her business skills to use. Carol recalled traveling for her career and setting up career management programs for corporations, which required her to ship necessary items to a nearby FedEx or UPS store. To manage PAH on the road, she implemented a similar practice.

Carol Volckmann and her husband, Dick, prepare for an adventure on their e-bikes in October 2021. (Courtesy of Carol Volckmann)

Enjoying life

Although managing Carol’s rare diseases can feel like a full-time job, this couple still knows how to enjoy life. They enjoy riding e-bikes and just brought home a new golden retriever after losing their beloved dog Spirit in April. Carol and Dick credit their quality of life to due diligence, organizational skills, and continued research. They also make sure to put time for themselves on the calendar, keeping a day or two a week appointment-free.

It’s now been almost 20 years since Carol’s diagnosis. She said, “I’m stable, 78 years old, and plan on many more years of living a loving, fun life.”

When I asked her for advice on managing this incurable disease, she said, “Never give up, learn all you can, ask questions and get another opinion if it doesn’t feel right. If you have a partner, work together on this life project, and never forget to give back to your caregiver.”

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.