Wednesday, June 26, 2013

PHA On-Demand

Last night it was my honor and privilege to represent the Pulmonary Hypertension Association at one of their PHA Medical Education events. An On-Demand Program.

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.

And it’s a shame, but I understood it. Now this isn’t a doctor to patient group presentation, it is a doctor to doctors and nurses and clinicians in general. The presentation is a CME course/class offered by PHA for clinicians; especially designed for pulmonologists, cardiologists, rheumatologists, internists, and primary care physicians, as well as nurses, physician assistants, and other allied health professionals who help care for patients with pulmonary arterial hypertension (PAH).

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.

Remember to smile -- it's contagious

Saturday, March 23, 2013

I'm a YO YO .... again

Well, here I go once again. Up or down... that would be how I feel. You know when you have a chronic illness you have good days and not so good days. Therefore, I consider myself a yo yo of sorts. I'm up one day and down another. At least the up days, those good days, still out number the not so good days. I refuse to have a bad day. It's just not in my spirit.

I am so glad I finally figured out how to blog once again. Been a while. Since I had my operation I haven't been on as often as I would like. First cause was - I couldn't type (not that I really can right now) and then I spent so much time learning how to walk, how to feed myself and yes how to type once again; and the other things that go along with having a "normal" life. Who me, normal. As we say in the PH (pulmonary hypertension) community, we now live a new normal.

You ask what is pulmonary hypertension: "High blood pressure in the lungs is called pulmonary hypertension (PH) or pulmonary arterial hypertension (PAH). Once considered rapidly fatal, this rare disease is still very serious but treatable. Yet even with nine therapies available, many patients receive proper diagnosis and treatment too late. Symptoms often lead to misdiagnosis of pulmonary hypertension as sleep apnea, COPD, asthma or obesity. Many patients will see 3 or more different physicians over a 3-year period before they are properly diagnosed with PAH. The average time between PH symptom onset and diagnosis is 2.8 years Almost ¾ of patients have advanced PH (Class II or IV) by the time they are diagnosed. The diagnosis time has not changed in over 20 years." partially borrowed from the Pulmonary Hypertension Association

I have this - this life threatening disease, others also have this disease, approximatey 30,000 in the USofA and about 150,000 world-wide. Not a very common disease at all considering, and I call it the Dastardly Disease(see Novemer 2010); I wrote a poem about it. Says it like it is. While I was in the hospital (suppose to be there 5 days and ended up being almost 3 months)one of the nurses copied my poem, enlarged it and taped it to the wall. I made every doctor, nurse, techie, cleaning staff READ IT. It brought tears to some and the docs said it really does say it like it is.

I think you can tell by my writing here why I titled this YO YO!. Not only does my mind go up and down, so do my innards :D The hope was with the open heart surgery I would be cured of the Dastardly Disease - didn't happen but I am on half the medicatin I was on, my heart is getting stronger and stronger. I am able to now exercise every day (week day, I take the weekends off) and I can now walk without looking like a toddler with a "load" in their diaper. Took a while (almost 2 years) but I'm getting there.

Yet, wouldn't you know, something is still going on. I have great doctors and they listen and follow thru. i.e. last week I had a 24 hour Holter Monitor and a chest x-ray. Don't have the results of the Holter yet but the x-ray showed no signs of pneumonia. Not wheezing or anything like that, just something isn't right in the bod. So I'm upsy, downsy, like a yo, yo.

I'll try to write more often, now that I figured how to do this; well, I think I have .... AND