About 14 years ago, our oldest son, Cullen, started showing signs of disease. For two years, we lived with the frustration of not knowing the cause. Finally, we discovered he had idiopathic pulmonary hypertension (PH).
Although relieved to finally have a name for his condition, the challenges associated with PH quickly swelled to terrifying proportions. It has been a difficult journey, but in August, Cullen will celebrate six years after having a heart and double-lung transplant.
Many have credited my husband, Brian, and me as the sturdy trunk supporting our little family tree. But a tree is only as strong as its roots, and ours are as strong as they come. Without the frequent and generous support of our parents, we never could have weathered the storm.
My parents, Rich and Maggie Cyzewski, live in New Jersey, and my in-laws, Ron and Naomi Steele, live in Wisconsin. Overcoming the distance to our home in Washington state seemed daunting, but thankfully both sets of grandparents were up to the challenge. Many cross-country treks and visits lasted months so they could be close to us and offer their support.
Over the years, we have copiously shared Cullen’s story with special attention to the perspectives of Cullen, his brother, Aidan, Brian, and me. It’s time to do the same for the grandparents.
When I interviewed the grandparents, each gave credit to their faith. Their prayers have sustained both them and us. Maggie (“Nanny”) is seldom without her rosaries in hand, and she has prayed to her favorite saint, Padre Pio, from PH to post-transplant. Ron (“G’Pa”) and Naomi (“G’ma”) have frequently asked their church to join them in prayers for Cullen and his doctors, and to guide the surgeons’ hands during procedures, especially Cullen’s transplant.
Each grandparent expressed how shocked and worried they were when Cullen was diagnosed with PH, especially when they were told that it is life-threatening and has no cure. It took time to explain this rare disease to them. Naomi was a medical transcriptionist, so she had heard of PH before but didn’t really know what it was. I suggested PH websites, and she was horrified by what she learned.
Maggie was equally upset. What has helped her is my promise to keep nothing from her. She said that worrying about the unknown would be harder.
Rich (“Pop-Pop”) was concerned prior to Cullen’s diagnosis that something was wrong with his heart. His suspicion intensified when he heard that while playing soccer, his grandson had stopped short while scoring a goal to clutch his heart and catch his breath.
This and struggling for breath while climbing stairs sounded like what Rich had experienced when playing high school basketball. It wasn’t until well into adulthood that he was diagnosed with a heart condition that required stents. He didn’t want his grandson to wait as long as he did for a diagnosis and was relieved when we took him to a cardiologist. A right heart catheterization later confirmed that Cullen had PH, and that the disease severely enlarged his heart.
Years later, when Cullen was listed for transplant, the wait for a donor was emotionally draining for everyone, including the grandparents. When Cullen went through a dry run, Ron said it was a great shock and required a lot of prayers to maintain hope that he would eventually receive the life-saving surgery.
Worrying about Brian, Aidan, and me also has weighed on our parents’ minds, and we are ever-present in their prayers. They all expressed how lucky Cullen is to have a family so devoted to helping him stay well. Rich gives Brian credit not only for how hard he works to provide for his family, but also the fact that he stayed.
“I know guys who couldn’t have handled the stress of having a sick child and would have left their family,” Rich said.
They are proud of Aidan for overcoming the struggles he has faced as the sibling of someone with serious medical challenges. Maggie knows from her visits that he worried and missed us when hospital stays kept us away for long periods. Nevertheless, Aidan was always able to joke around and smile.
“Aidan has always managed to maintain a good attitude,” Naomi said.
Ron added that he is not surprised Aidan has grown into an amazing man.
Rich, a retired Marine, gave the following analogy to express the strength and perseverance that all four grandparents admire in Cullen. Rich’s drill instructor used to tell him that if Rich got shot, he should put a finger in the hole and keep going.
“That is what Cullen has always done,” Rich said. “There is a guy who belonged in the Marine Corps.”
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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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