If you feel like pulmonary hypertension is messing with your mind, you are not alone. Over the years, many have expressed similar concerns. I have been a member of a Facebook group called “Families of Children with Pulmonary Hypertension” since my son’s 2008 diagnosis, and…
Columns
Are you a leader or a follower? Do you work well with routine or spontaneity? Can you muddle through mundane tasks or are you best when challenged with high-pressure situations? Do you like giving advice or prefer being an active listener? When my son Cullen was diagnosed with pulmonary hypertension…
When people ask to hear my story, I always offer the same opening line, “When I was 4 years old, I was diagnosed with a rare heart-lung illness,” as if I did not exist prior to that fated day. In some ways, this feels true. If I have learned anything…
Living with a serious long-term illness can desensitize us to our own suffering. I often find I experience a reality check when I tell other people about my diagnosis and what it means for me, and then hear their reaction. People…
The lives of pulmonary hypertension (PH) patients, transplant recipients, and their caregivers interconnect through our experiences and profound compassion for what we’re all going through. Sharing our journeys is like passing a torch from one person to another, helping to light the way through this dark disease. In an email…
Grief and loss have been common throughout this pandemic. According to a research article published last July in Proceedings of the National Academy of Sciences of the United States of America, approximately nine close family members are bereaved every time a person dies from COVID-19. Although I…
After receiving a heart and double-lung transplant in 2014, my son Cullen no longer has pulmonary hypertension (PH). Since then, he has been focused on protecting those precious organs. When asked about his PH days, Cullen is direct in his response: “It’s no longer a part of my life. I…
I view marriage in a very spiritual and traditional way. It is one of the seven sacraments of my Catholic faith, and legally, it unites two people as partners in a personal relationship. To me, the vows are sacred, and as I mentioned in a previous…
“Don’t mind the pacemaker on the left side of my chest — it sticks out. I hope you’re not grossed out by the port because you can see the tunneling of the line under the skin. I’m sorry about that.” In an attempt at an…
The last five months have been bumpy for my family. Back in November, my husband, Manny, and I both got COVID-19. I was hospitalized for several weeks and not expected to come home. My recovery continues, but I am grateful for…
The ongoing pandemic means my normal schedule of hospital appointments has been disrupted for more than a year. I have previously written that this makes me increasingly anxious about my physical health. Although I’ve had telephone check-ins with my…
Can you imagine being denied something that could prolong your life? In a previous column, I interviewed adult pulmonary hypertension (PH) patients who are ineligible for transplant. Their responses were open, honest, and mature. But what if the patient is a child? How do parents cope with that kind…
