When going to the hospital for tests, one always hopes and prays for the best-case scenario. Last week, I had a number of tests and was lucky enough to get pretty good news across the board. My walk test was good and has definitely improved…
According to the Anxiety and Depression Association of America, nearly 40 million people in the United States experience an anxiety disorder in any given year. If you have pulmonary hypertension (PH) and anxiety, you already know this struggle. Anxiety affects us in more ways than we ever thought possible.
On Aug. 7, my son Cullen celebrated his six-year anniversary of having a heart and double-lung transplant. In last year’s anniversary column, I shared the joys and struggles that come with this miraculous gift. Taking care of new organs is an enormous responsibility. The reality that Cullen would…
My dog, Bernie, turned 1 last week. In the nine months that I’ve had him, he has taught me more about unconditional love than I could ever teach myself. I wake up to puppy snuggles and feel his tiny paws resting somewhere on my…
“When thunder rolls through my life, Will you be able to weather the storm? There’s so much I would give ya, baby.” While these lyrics to Pink’s “Love Song” aren’t about chronic illness, they remind me of the roller coasters we encounter in our lives. I am…
When driving to doctors’ appointments for my son Cullen, we often listen to “The Danny Bonaduce & Sarah Morning Show.” They make us laugh, and we enjoy the topics. Last week, we were headed to an appointment when the show asked listeners to “call in and share which profession…
Living with congenital heart disease and pulmonary hypertension has taught me to let my physical health “be what it is.” This past year, giving myself permission to “be” helped me accept my bad days as they happened. I had to learn how to rest, listen to my body, pay…
As I write this, I’m due for a hospital visit tomorrow for a day of tests. And I have some pretty major pre-appointment anxiety. I haven’t had a face-to-face appointment to monitor my pulmonary hypertension in almost six months. While…
If you are battling a chronic illness, odds are you have also battled health insurance. My son Cullen managed his pulmonary hypertension (PH), received a heart and double-lung transplant, and survived almost six years post-transplant without running into any major health coverage roadblocks. Any issues were quickly resolved with…
Since my recent hospitalization, I am not allowed to drive for a while. This may seem like no big deal to some, but for me, driving is my little bit of freedom; it’s my independence. Usually, I only drive for small distances near my house. Some days, this is…
Lots of people count their steps using a Fitbit device or their phone, but for me it has been a total lifeline. Being less active during lockdown made me worry that my fitness had declined and that I had generally deconditioned. Putting on a bit of…
It’s challenging to develop healthy coping styles upon receiving a shocking pulmonary hypertension diagnosis. My 8-year-old son, Cullen’s, PH diagnosis was like a magic wand that instantly transformed our family’s lives. For roughly two years we had struggled to find the cause of Cullen’s distress, but once we had an…
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