Welcome to my blog about Caregiver Support and Pulmonary Hypertension Awareness! I’m PHindACure, a 47-year old Father, Husband and Caregiver to a wife with Stage IV Pulmonary Arterial Hypertension, a rare and incurable lung disease. In 2022, after 23 years of marriage and 10 years of caregiving, I began to experience severe Caregiver Exhaustion and Depression. During a dark period during which time my wife’s disease was progressing and I was at my lowest, I decided to write.

Two years on, writing has become a big passion of mine, but a hidden passion. With the encouragement of my daughters I’ve decided to take a step outside my comfort zone and begin to blog in 2025 as well as publish some of my writing. Since writing was a form of therapy when suffering from Caregiver Exhaustion, I thought that blogging about my experiences as a Caregiver would be a good start.

Here is a little about me. I’ve been married for 25 years with two daughters aged 19 and 22. For my day job, I’m a Senior Network Engineer working at an Electric Utility working in the OT (Operations Technology) space. Despite a 25+ year career in IT and a dozen certifications on my resume, I have no degrees. Aside from lifelong passion for stories and good grades in English classes, I don’t know anything about writing. Since 2022 I’ve read some books about Writing, but prior to 2022 I had really written anything except for test plans, proposals, procedures and other technical documentation as part of my 9-to-5.

I’m not a medical professional, but I know a lot about Pulmonary Arterial Hypertension. I wish I didn’t. I have nearly 3,000 hours as a Rare Disease Caregiver. I’ve mixed and infused lifesaving IV medications over 2,500 times. I’ve gone to every quarterly appointment, echo, right-heart catheterization, dressing change, blood draw, ICU and hospital stay (aside from where COVID prevented me). I know more about Pulmonary Arterial Hypertension, types of treatments and medications that some nurses we’ve encountered (no disrespect).

In many ways Pulmonary Arterial Hypertension (PAH or PH for short) has dominated my life. Ever since my wife’s diagnosis on August 19th, 2012, it has had a stranglehold on me and my family. I’ve cried and prayed and done everything in my power to help her in this fight. In fact the name of this blog is even a reference to her need for a lung transplant, so it makes sense to end this first post talking about her and this terrible disease. On August 19th, 2012, my wife was diagnosed with stage III/IV Pulmonary Arterial Hypertension and heart failure. She was 31 years old with 9 and 7 year old daughters, in good physical health with no risk factors and symptoms that were easily dismissed. In the end, she was given a 50% chance at living 2-5 years, and we were told that if she lived a year she would need a lung transplant.

In 2025 I will be using this blog to cover a wide range of topics related to caregiving, rare disease caregiving and Pulmonary Arterial Hypertension. If you’re reading this post and you’ve gotten this far, I hope you’ll continue to join me!

PHind A Cure – Terry Williams