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Taking care of my body requires getting the right nutrition, exercising in ways I can handle, and paying attention to my mental health. Lately, I have noticed that anxiety and fatigue have increased at the end of my day. When I brought this up…

One of the hardest things about the diagnosis of a progressive illness is grappling with how your disease will affect your future independence. It can be scary and painful to think about how, as your disease progresses, you will become more and more reliant on other…

“I have watched fear change us. I have watched fear ride roughshod over our families, organizations, and communities.” – Brené Brown, “Braving The Wilderness.”  In the above quote, lecturer Brené Brown was speaking about fear after 9/11. Lately, we are again learning to live in fear. We are…

Lately, I have been reflecting on the power of words. It started one sleepless night, as I wondered how often I have thought or spoken the words pulmonary hypertension since my son’s diagnosis. Even after his heart and lung transplant relieved him of that dreadful condition, not a day has…

A few years ago, I thought that talking openly about my fears and worries was a sign of weakness. I convinced myself that being strong meant putting on my bravest face for others to see. I may have fooled some people in my life with my “everything is going…

The COVID-19 pandemic is a stressful time for everyone, but it can be particularly stressful for those trying to manage long-term medical conditions. Many people with serious health problems are seeing their doctors’ appointments canceled, postponed, or changed to telephone or teleconferencing appointments. Since my…

I often hear that I’ve changed since my pulmonary hypertension diagnosis. I constantly speculate about whether this might be true, and then repeatedly realize it’s pretty accurate. Surviving every day with a rare and life-threatening disease like PH takes a toll not only on my body, but also my…

When my son was diagnosed with pulmonary hypertension (PH), his doctors were proactive in caring for his physical health and forthright about maintaining his mental wellness. He was 8 years old and facing adult-sized concerns and realities. To help process all that was happening, they referred him to a…

When living with significant health problems, one must balance not only personal worries, but also those of family members and friends. This can be a lot to handle. One of the things that upset me most after my pulmonary hypertension diagnosis…

In 2014, my son Cullen received a heart and double-lung transplant after a long battle with pulmonary hypertension (PH). Washington state was home, but for the first four months of recovery, we lived in California, close to the hospital where he received his transplant. Except for an occasional visit,…

Have y’all had times during this self-quarantine when you’ve lost it? If so, you’re not alone. Last week, my husband was home from work all week. He was feeling achy and had chills for several days, which was far from normal. Thankfully, he did not have a high fever. But…

Going to college, starting a new job, finding the right person to love, and getting my first apartment all seem like wonderful life accomplishments. I would have thought that graduating from college and moving into a new place with my boyfriend would be some…