When my son Cullen was diagnosed with pulmonary hypertension (PH), my husband and I would have gone to the ends of the earth to help him fight it. When asked if we would be willing to drive from our home in Washington state to California to seek care and treatment from a PH specialist, we loaded our car and went. The doctor and his team were exceptional and filled our hearts with hope. It was worth the multiple trips a year for specialty care follow-up, procedures, and PH treatments.
It was quite an ordeal each time to get the family and car packed, but once we were on the road, we made the best of the situation. When time allowed, we stopped at special locations to stretch our legs and enjoy different surroundings.
Visiting Northern California’s Shasta Dam, for example, was an adventure that Cullen and his brother, Aidan, really enjoyed. It was a great way to briefly take our minds off our destination and explore an exciting and new place.
One favorite stop became a medical journey tradition. The Jelly Belly Factory was too tempting a place to drive past with two little boys in the car. We enjoyed a tour during our first visit, and to Cullen and Aidan’s amusement, one of the machines malfunctioned. Jellybeans galore spilled onto the factory floor, igniting giggle fits from all the children watching.
We returned home from California each time with many bags of the boy’s favorite beans: Jelly Belly Flops. These imperfect shaped beans taste just as delicious, but with the added pleasure of trying to guess the flavor you just popped in your mouth. They also made great gifts for those who helped us out at home while we were away. Cullen even gifted President George W. Bush with a bag when they met through the Make-A-Wish Foundation.
It was during these trips that we discovered the Black Bear Diner. Although we have this diner in Washington, too, we made it a routine stop specifically for our trips to and from California.
Traditions were made, but we also enjoyed spontaneous excursions. They helped keep us busy during nerve-wracking gaps between medical appointments and procedures. A few days before Cullen’s surgery to have a central line placed and begin continuous intravenous Flolan (epoprostenol GM), we took him on a trolley ride and tour of San Francisco. This happy memory was his last before his way of life dramatically changed with the limitations and responsibility of aggressive PH treatments.
There is a proverbial phrase, “When life gives you lemons, make lemonade.” Metaphorically speaking, we set up a lemonade stand with other PH families every time we arrived in California for medical care. Together we would enjoy good food, lots of laughter, and fun times, and we would try not to talk too much shop about PH. It was comforting to know that the people we were spending time with were trying to make the best of the same bad situation. Our get-togethers became a PHamily tradition.
Cullen received a heart and double-lung transplant six years ago in California. He and I lived there for four months during his recovery. Being away from our home and family was hard, but we survived emotionally by creating more traditions and exploring new places.
California Pizza Kitchen became our choice spot to eat after a long day at the hospital, especially after Cullen’s bronchoscopies. We always ordered the same meal, and we were often served by the same friendly waiter. The familiarity gave us a feeling of a home away from home.
Although we didn’t have immediate family with us, we did have PHamily living in the area who were also recovering from transplant. Who knew the best memories could be made during such hard times? And they were hard! The patients were often physically hurting, emotionally tired, and cared for by exhausted moms.
But once again, we made the sweetest lemonade stirred by the bonds of friendship and understanding. We had meals together, enjoyed movie nights, escaped to special places, and helped each other survive bad days.
Cullen transitioned this year to adult care at a hospital in Washington. But just because he’s older and no longer traveling to specialists in California doesn’t mean traditions end, or that new ones can’t be made. There are many wonderful restaurants and places to tour in Seattle, and endless medical appointments that will give us reason to seek them out.
If you are a PH or post-transplant patient, find ways to ease the stress of medical appointments and procedures by creating stress-relieving traditions to coincide with them. Having something to look forward to, like a delicious meal or visit with a good friend, can turn difficult days into wonderful memories.
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.
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