My sweet Caroline became our angel on August 31, 2021, 11 days before our 39th wedding anniversary. I share her story as a cautionary tale that I encourage others to share. Perhaps together we may spare a beloved mother, sister, daughter or wife from being taken from her family too soon. Caroline was all of these.

As this community knows, pulmonary hypertension hides in plain sight. It often attacks middle-aged women, and in too many cases, the cause of the condition is unknown.

As far as we could tell, our story began in 2019. Upon returning home from a great family vacation in the Bahamas, Caroline contracted a respiratory virus that lingered for months. We treated the symptoms and lived our lives. Eventually, she got over it, or so we thought.

PH and the COVID-19 pandemic

Caroline’s biannual diabetes checkup showed her blood oxygen level was in the high 80s. After several pulmonary consultations, she was supposed to have a surgical biopsy in April 2020, but then the COVID-19 pandemic hit. Caroline never had the procedure and lived on oxygen for the rest of the year.

In the spring 2021, she began retaining water. This was not unusual, since her blood pressure and diabetes occasionally caused water retention. We assumed that was the culprit, but this was a lot of water. Caroline started having some gastrointestinal concerns, which appeared to be a separate issue. We treated the symptoms and then she contracted a patch of cellulitis on her leg. The wound would not stop weeping and we learned later that all these symptoms were driven by her PH.

I would be remiss if I didn’t mention the effect the pandemic had on Caroline. Her fear of entering a doctor’s office, emergency rooms and being in the presence of other patients was far greater than the annoyance of dealing with her symptoms. We did our own research and tried virtual doctor appointments so she wouldn’t have to leave the house. But managing her symptoms was challenging via tele-health visits. When Caroline contracted cellulitis, she finally broke through her fear of going to the doctor.

We spent the next two weeks in the hospital, with the second week in the intensive care unit. The plan was to get Caroline’s water retention under control and then evaluate her heart. The procedures were scheduled for August 31, 2021, but early that morning, she spiked a fever and her blood pressure crashed. For twelve hours, the ICU staff did everything they could.

At 11:11 p.m., a single tear rolled down Caroline’s cheek and the monitor went dark. No flat line. No tone of finality, like on television. Just gone. She became our angel.

Had she received treatment for her PH earlier, she might have survived.

Remembering Caroline

I approved an autopsy because I wanted Caroline’s case to possibly move the research needle a tick farther. I wanted her loss to have greater meaning. Truth be told, I also wanted someone or something else to blame besides myself and God.

The autopsy results were inconclusive. I inquired why the pulmonologists didn’t diagnosis her in February 2020. At the time, her numbers were trending toward PH but were still at the low end of green. More to the point, they were focused on a viral cause. It wasn’t anyone’s fault.

Even so, I still carry vestiges of guilt. No one ever blamed me but me. So, this story is also for us — the survivors. If you are a survivor, don’t be like me. Lay down your guilt. Accept that PH has outsmarted smarter folks than us. It wasn’t our fault.

Now I read the Pulmonary Hypertension Association’s newsletter every month. I donate Caroline’s birthday money to PHA every year on March 6. I also lament that if Caroline had been properly diagnosed, we could have joined this wonderful PH community together and taken advantage of the support you all provide.

I encourage others to learn from us. I share this story, painful as it is, with the hope that even just one of you may be moved to share it with someone who needs to hear it. Educate yourselves. Do not diagnose yourself with things you find on the internet.

Know that the symptoms vary from patient to patient and that seemingly disconnected symptoms may be intertwined in ways only medical professionals can untangle. Know that PH sometimes eludes medical professionals. Know that we can beat or mitigate this condition if we can identify it soon enough.

In life and afterlife, my Caroline took care of everyone close to her. There is always room for one more.