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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Chuck Thompson - phaware® interview 284

Sep 24, 2019

Pulmonary Hypertension caregiver Chuck Thompson discusses the importance of support groups for PH patients like his wife, Barbara.

My name is Chuck Thompson. I’m a caregiver for my wife, Barbara. I also had a mother who died from PH that I was a caregiver for, and a sister who died from pulmonary hypertension back in 1992.

Being a caregiver, we started a support group back in 2004. My wife was not supposed to make it through 2003. We got her on Tracleer, and about the time she got where she could walk and talk, she wanted to start a support group, and so we did. Officially, I haven’t been a co-leader until just last year, but I had worked a whole lot at the support group meetings. We now have, I think, 41 people that are members of our support group, and we meet once a quarter.

It really became important to me when my mother came down in 2003 for my daughter’s wedding, and I could tell that my mother had the very same symptoms that my wife had. They were giving her coumadin, and I would tell her for the next few months about pulmonary hypertension. She said she saw her doctor and he finally diagnosed her with pulmonary hypertension, and he was giving her coumadin. I told her, “Mom, that’s not a treatment for pulmonary hypertension,” and she got so mad at me. “Do you think you know more than this doctor who spent all these years [practicing]?” I said, “Mom, I think I’d know more than that doctor does about this.”

So many people are in the dark about things, and they need to know so that if they’re getting the wrong treatment, they can go and see another doctor. It took my mother a long time. She finally went to Philadelphia and saw one of the most foremost PH doctors, and she got put on Tracleer, and few months later she was doing a whole lot better. In fact, I went and got her and brought her back to our house.

Support group is very helpful to people. You know, a lot of people think that support groups are where you go to just cry about your problems, but a support group for pulmonary hypertension, you learn stuff all the time. We have specialists that come, and you know, I constantly learn things. Learn things about making sure that you have, as a caregiver, the patient’s medication list.

We just recently had one patient who went to the hospital and the first thing that the doctors did was take away her PH medicine. She was dead within a couple of days. That’s the second person that we’ve had like that. As a caregiver, you’ve got to have a caregiver who knows your situation, who can say, “Oh, no, this is not going to happen.”

Things like, emergency medical staff are trained to look on the refrigerator for all this information. These are things that people will learn at a support group that probably they have no idea about, and they won’t get any idea about it, because the doctors pretty much don’t tell them, even the specialists. I’ve never heard a specialist tell my wife those things, or my mother.

When I first learned about it, when my wife was diagnosed, they said that there were only about 250,000 PH patients. They also said one in a million people. In Memphis, we have a million people. We have 41 people in the support group. Obviously, what they said back then was not correct. So people need to be aware of what is there so that they can go to the right kind of doctor.

My name is Chuck Thompson, and I’m aware that I’m rare.

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