This podcast series, created and produced by phaware, is being offered as a regular guest feature on Pulmonary Hypertension News to bring the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You may listen to the podcast directly, or read it via the transcript that runs below.
I’m Aware That I’m Rare: James Hazlett
The phaware™ interview
Pulmonary hypertension and scleroderma patient Jim Hazlett is a proud member of the PH Men’s PHight Club. Jim discusses the importance of early diagnosis, clinical trials, PH awareness and his gratitude for his caregivers.
Jim Hazlett is from Atkinson, New Hampshire.
I had open-heart surgery in 2009. When I was going through my rehab following my open-heart surgery, I noticed that I was having shortness of breath and that I couldn’t do the elliptical like I had done prior to my mitral valve repair. Progressively over the next five years, I experienced increasing shortness of breath, and saw three pulmonologists and two cardiologists to try to determine what I had.
Last March, I saw a new pulmonologist. He said, “I don’t know what you have but I think I know who might.” He referred me to a rheumatologist, who diagnosed with scleroderma and referred me to Dr. Hap Farber at Boston Medical Center, who confirmed through right heart catheterization that I had PAH.
Since my symptoms kept getting worse but I was not being diagnosed, when I finally found out what I had, a combination of scleroderma and PAH, in some ways it was a little unnerving because of all the misinformation on the Internet. But at the same time, it was clear that I had identified the right sources of care, the right doctors, and that they would properly diagnose me and set up an appropriate treatment plan.
I really appreciate finding the PH Men’s PHight Club on Facebook, because although I attend multiple support groups for both scleroderma and for PH, the PH Men’s PHight Club gave me the opportunity to interact with men who have PH, and to also exchange jokes and stories and really bond a little bit with people. I found it very useful as they picked me up and as a source of community and information on a day-to-day basis.
I am responding well to medication. I’m currently on one drug and in a trial for another one. They also brought my right heart pressures down. At the same time, being a heart surgery survivor, my family was already dealing with those issues and concerns, and this puts a further strain on my family. My wife, in particular, and my daughter, they fully recognize that I have a serious disease, and at the same time, they provided more than adequate care to me. But I’m concerned about the effect this is having on them. I don’t want to lose my caregivers in the process of my dealing with the disease. I want their health to be good and their lives to be enjoyable, too, and I’m very concerned about the effect this is having on them.
People say, “Well, you don’t look sick.” I get that all the time. The person that I have the hardest time convincing that I have PH is the first person I see in the mirror every morning. Sometime between 3 and 7 p.m., and during the day, I hit a fatigue wall and I remember, yes, I do have a problem.
There are a lot of people out there that have yet to be diagnosed or have already been diagnosed but misdiagnosed. So, I think awareness is absolutely critical to making sure people identify that they have a PH problem, determine what that problem is, and then determine the best methods of treatment and the best program, both to provide them support and to provide support to their caregivers.
I’m Jim Hazlett, and I’m aware that I’m rare.
EVERYBODY HAS A STORY. WHAT’S YOURS?
phaware wants to share your pulmonary hypertension story with their engaged global audience. Whether you are a patient, caregiver, or medical professional, they are enlisting PH community members from across the globe. Visit www.phaware.global/podcast to share your story and to be considered for a future episode. And learn more about pulmonary hypertension at www.phaware.global. #phaware #phawarepod
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