Dr. Omar Minai from the Cleveland Clinic (Cleveland, Ohio) was the guest speaker and his presentation was titled: “Suspecting Pulmonary Hypertension in the Dyspneic Patient: Who, When, and How.” It was an excellent presentation, actually one of best I’ve ever heard.
On-Demand program is something the Pulmonary Hypertension Association provides and is designed to improve competence, performance and patient care practices by instructing clinicians in the highest quality of care for patients with PAH. And it is FREE.
I was asked to represent the Pulmonary Hypertension Association and tell all those wonderful things you wanted to know (and maybe afraid to ask ) and give a very mini presentation on what the Association provides (as in the paragraph above) not only provided to clinicians but also phor patients and caregivers and the PAH community in general. You try doing that in 5 to 7 minutes. I had 12 slides which did cover it all but again I was to do an ad lib version. Now, I’m not sure you realize this but there are over 10K pages on the PHA web site – you try to explain it all in those 5 to 7 minutes
I touched on their research,, public awareness and services – how they connect with colleagues – upcoming symposium for clinicians and of course the PHA 11th International conference and scientific sessions (in Indianapolis, IN next year). Also advances in PAH. How to ask phor and request medical education programs such as the On-Demand; the preceptorship program; the PHA Online University; last but not least the PHA Patient and Caregiver Services. Phor that one, I brought along my copy of the Survivors Guide, an Envelope of Hope post card, a copy of Pathlight and some miscellaneous brochures I have. I really went into the Patient to Patient Support Line, the email Mentor program, how PHA offers chats for patients, caregivers, and specific “age” group chatroom. How they will mail out a packet of info to newly diagnosed pholks. And most importantly how they offer education for patients and caregivers with conferences, On the Road seminars, conference calls, the list goes on. Being a Support Line Volunteer and also an email Mentor, I told a couple of stories on what patients and caregivers may ask, share or vent.
Wouldn’t you know I did NOT mention the upcoming Walk & Roll that the Cleveland Area PH Support Group is having on July 13th. I could kick myself phor that one, after all, this meeting was held in Akron and the walk is at the Akron State Park. And I wanted to mention and ask them to call their respective Congressperson to co-sponsor the new PH bill HR 2073 Well, slap me back side of the head.
Now this part is interesting. Tom (the husband I’m not allowed to live with) usually takes me everywhere I need to go and I thought phor this event I would ask a friend to go along with me, (give him a break) and you know to be my co-pilot and make sure I went in the right direction. I asked one of the ladies from church to ride along. She said she found the session to be very informative and although she didn’t understand it all, she got the jist of it. On the drive home we talked about PAH and I did the ad lib version of how it works (or how our lungs and heart don’t) and she said “I think my brother-in-law may have this he’s always short of breath and has trouble doing things” I gave her a couple of the brochures I always have with me and it sent goose bumps up and down my spine. God certainly does work in mysterious ways.
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