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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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Denise Momburg - phaware® interview 258

Jun 25, 2019

Patient Denise Momburg discusses her pulmonary hypertension diagnosis, being misdiagnosed with asthma and how she faces her new normal.

My name is Denise Momburg and I am a pulmonary hypertension patient.

For a majority of my life I was pretty physically fit. I did rock climbing. I have two boys. They're grown now. We did rock climbing, skiing, hiking, everything, all kinds of stuff. Then about 10 years ago I started having shortness of breath and just feeling tired and gaining weight. I went to my first doctor, who for probably three to five years kept saying, "You have asthma, lose weight, exercise." I would come out of the office crying and saying, "Well, I would exercise and lose weight if I wasn't short of breath."

Finally, I started thinking, "Okay, this isn't asthma." My son was born with asthma and he's 33 now so I'm like this isn't the same. The medicines they've given me are not working. So, I went to a new place and right away they said, "You don't have asthma." I cried because I was like, "Okay, I'm not crazy." I knew I didn't but I didn't understand what I had. Right away sent me to a cardiologist who did a right heart catheterization and he came out and said, "You have pulmonary hypertension.” I cried then again because I was like, "Okay. I have something. I don't know what it is. I'm just glad that I'm not crazy and it's not asthma."

From there we started different medications. I haven't lost all the weight I want to but I'm finally now able to walk. I've done two 5Ks and I couldn't before, with my oxygen though. I still have to take my oxygen but I've gotten them completed. I feel like I'm not normal like before but pretty close. There is something else out there besides the usual diseases that everybody seems to get diagnosed with, the asthma or you're overweight or you need to exercise or you're getting old. If you're more aware that there's something else out there, then it might help to make the diagnosis much quicker than three to five years.

First listen to yourself, because even though the doctors are professionals, they know what they're doing, sometimes if you're not listening to how your body feels and that it's still not feeling the way you think it should, if you talk to the doctors continuously or even get second opinions, that will help a lot. Also be positive. I always try to stay positive.

I named my machine a name and I joke about it. I always say, "I'm going to bling him up and put sparkles all over him." So I try to do whatever I can to stay happy. His name's Tony Stark by the way, of the Iron Man kind of theme. I carry my oxygen around and tell people about it all the time. I've learned that I'm a lot stronger than I thought I was getting through this. It's been quite an experience but I've made it. I have a granddaughter who is five now and she is here at Disney. I stood at Epcot all day yesterday. We were there 10 hours. I didn't think I could do it but I did it. It was fun.

My name is Denise Momburg and I am aware that I am rare.

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