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…
Columns
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…
The Real Red Band Society
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…
The most commonly asked questions I get about my pulmonary hypertension (PH) are: what were your symptoms prior to diagnosis, and how did you get diagnosed? People in the PH community are always keen to know the answers as the disease…
In a previous column, I shared my son’s battle with weight loss and gain caused by illness. Equally challenging has been his efforts to meet daily water intake goals. How much water a healthy person should drink varies according to height, weight, activity level, and environmental conditions. Helpful online…
If you listen to music, you may already know that it affects our mood. I listen to music almost daily. Playing music on Spotify is simple, and I appreciate that I can choose a genre or mood. For example, I like to listen to upbeat music when I am cleaning…
I Found My Strength in Isolation
After so many years of struggling to find my voice in advocating for my healthcare, today I am proud of how far I have come. Speaking up for my needs and advocating for the best available care hasn’t been easy. Processing medical trauma…
I’ve written before about how I have adjusted my diet since my pulmonary hypertension diagnosis, but this isn’t something I’ve always found easy. When struggling with mental health or the usual pressures of daily life, it can be…
Since Feb. 26, many Christians around the world, including me, have been following the 40 days of Lent. It is a time of fasting and repentance to prepare for Easter. How we practice Lent is a personal choice. Some give up tempting treats or make other positive changes to…
Recent Posts
- Medicare, some insurance to now cover wearable medical device for PH
- When I feel fatigue from PH coming on, I’ll take a day to reset
- Phase 2 trial of TX45 in PH-HFpEF patients completes enrollment
- NDRG1 gene linked to blood vessel scarring in CTEPH: Study
- The importance of connecting with others in the PH community
