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…
When my son Cullen was diagnosed with pulmonary hypertension, people often asked, “Can’t he just get a transplant?” As if he could walk into a hospital, request a heart and a pair of lungs, and be taken right into surgery! Determining eligibility for transplant is a complicated process of…
As I sit down to write my column for Bionews, the parent company of this website, I think about you, my readers. While I strive to write about various topics, I hope to touch on ones that people within the pulmonary hypertension (PH) community will find relatable. …
In 2008, when my son Cullen was diagnosed with pulmonary hypertension, I started a health journal on the website CaringBridge. I compare the pages of his medical journey to the opening paragraph of “A Tale of Two Cities” by Charles Dickens: “It was the best of times, it…
I’m often asked, “What is something that makes you happy?” Sometimes it’s by a friend reaching out to support me during a difficult week, or it might be a therapist helping me through a period of depression. Whatever the context, I’ve always struggled to answer it. When I thought…
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