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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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Darren Dempsey - phaware® interview 199

Oct 19, 2018

Canadian Pulmonary Hypertension Caregiver Darren Dempsey discusses the impact rare disease has had on his family and how stress impacts the entire family.

My name is Darren Dempsey. I am a caregiver. My wife, Nicole, was diagnosed with PH five years ago. It's really affected our family more than I could ever imagine. We've had to deal a change in employment. Change in finances. Change in the amount of work that I have to do around the house. But we have managed pretty well in the last five years.

Definitely was a shock. I knew that it was life altering as soon as they addressed it and they let us know this is pretty serious. My wife was in severe heart failure. We spend, I believe, 11 days in the hospital from time of diagnosis. We basically walking into a clinic, had some testing done, and didn't get home until three days before Christmas. I knew at that point that our life together was going to be very different than what had imagined or what we had anticipated prior to that.

Initially, we had friends over watching the kids and then we had to call mother to ask her to come over and watch the kids. Really trying to verbalize or let them know, "Hey, you got to get to my house and watch my kids because we're not going home anytime soon and we'll address the children when we get home." And when we did, they were babies. They're now eight and ten, but at five years ago it was a different story. They were pretty small and we took our time addressing it. But, you know, their mom was on 24-hour oxygen. When we got home so they knew something was up for sure.

It can be stressful. You know when you've got to spend 40 hours a week doing a full-time job and then coming home and clean up and cut the grass. We have three dogs, that's a lot of work as well. So I definitely know that the toll on my health is, you know, mentally and physically is there. Like I feel it. I know my blood pressure has changed in the last five years. I know that mentally I've become more and more exhausted think about just how I'm going to help my wife more and more. How I can try to keep myself healthy.

There's a lot of work that's involved when one person doesn't have the energy to give as much. And they give a lot in other areas, definitely. It can be stressful, for sure. I know that, like I said, you're stressed, you're worried about future health for your spouse who has PH and it places a toll on you mentally, for sure.

The one piece of advice that I could give a caregiver is this: It's extremely shocking initially and speak to others. Get as much support as you can and know that in a year or two years with good treatment, good doctors, having the right healthcare available, things will get a lot better. It will definitely get a lot better. We are definitely in a much better situation now than we were five years ago. So it does get a lot better.

My name is Darren Dempsey and I'm aware that I'm rare.

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