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…
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…
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…
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…
My son Cullen was 8 when he was diagnosed with pulmonary hypertension (PH). He spent much of his childhood in the hospital, talking to doctors, answering endless questions, and experiencing one traumatic event after another. It’s no wonder that Cullen and many other pediatric patients are commonly described as wise…
“Why can’t she just get over it?” It would not surprise me if there were people asking themselves this question about me. Since receiving a heart and double-lung transplant six years ago, my son Cullen no longer has pulmonary hypertension (PH). Despite this dramatic change, I continue to advocate…
The Mayo Clinic describes phantom pain as pain that feels like it’s coming from a body part that’s no longer there. Experts believe these sensations can be real and originate in the spinal cord and brain. But depending on the experience, it can also be diagnosed as a psychological…
According to NASA, the number of exoplanets, or planets beyond our solar system, is in the thousands and rising. Rare diseases are kind of like exoplanets. There are many, but unless you are a medical specialist, scientist, or patient diagnosed with one, you probably are unlikely to know much…
I have read articles claiming that playing video games excessively can increase the risk of health problems. Instead, they encourage children to go outside and play, and adults to hit the gym. That sounds like solid advice for healthy individuals, but for those battling serious illnesses, video games can provide…
A popular phrase people like to say when discussing the climate is, “If you don’t like the weather, wait a minute and it’ll change.” Living with a serious illness often can feel this way, too. You might wake in the morning without issue, and by early afternoon experience an onslaught…
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