30 Days of PH: Trust Your Gut and Do Your Research

Photo courtesy of Carol Volckmann

Day 1 of 30

This is Carol Volckmann’s story:

Trusting your gut, which is crucial with any disease, is more than just being your own advocate. I have learned how important it is to not only trust your instincts, but to do your research.

I was diagnosed with pulmonary arterial hypertension (PAH) by two pulmonologists, who each gave me three to five years to live. They told me exercises would not help. I did not believe them and searched for a pulmonologist who specializes in PH. That was 17 or 18 years ago, and I am still here!

Many of us have several medical issues going on, aside from PH. After seeing different specialists, I learned to keep asking questions and to get another opinion when things didn’t feel right. When I didn’t feel I was getting the right care, I changed doctors.

I considered my primary care physician to be my coach and would run everything by him. When he suddenly died, I had to find another. That new doctor had all the credentials, but the reality was, he did not provide the care I needed.

I learned to trust my gut, know my limitations, and not apologize for them. I learned more about my body — when I can push my limits and when I need to rest.

Research is something I continue to do. There have been a couple of times I have come across new information that my pulmonologist had not seen — and became interested in pursuing. One new technique I found has not been tested in trial yet, because of COVID-19, but my PH doctor is now in contact with that study.

My research helped me find a wound dressing that is totally waterproof. It does not tear up the skin and you can wear it for several days on a subcutaneous or IV site. I can walk into a shower and be fine. When I showed it to my PH doctor, he had the special pharmacy add it to the supply list.

I am not saying my gut always is correct, but asking the questions, doing the research, and following up have been a game-changer.

Pulmonary Hypertension News’ 30 Days of PH campaign is publishing one story per day from someone who has been affected by the disease for PH Awareness Month in November. Read the full series for more stories like this, and follow us on Facebook and Instagram, using the hashtag #30DaysofPH.