I wanted to personally thank you for the PHAssociation and the online chat that you provide. My wife of 14+ years Marla was diagnosed with PAH 16 months ago. Last March she was in right hear failure and had a mean pulmonary pressure of 138. At that time she was placed on Flolan and a host of oral meds. If it were not for the online chat and the ability to connect with others with PAH I don't think she could have moved past the initial shock. Today, I am over joyed to report that she returned from her quarterly check up with Dr. James Gossage and her pulmonary pressures and heart size are within the range of normal.
From March 2009 to January 2010 she has successfully been transitioned off of Flolan to Tyvaso and her oral meds have been reduced. The mental stigma of PAH still remains but the PHA chat is a constant source of hope, joy, sadness and renewed belief that together we can overcome. The community that PHA provides is instrumental in not only the physiological well being of PAH patients but their mental well being as well.
From a caregivers perspective and being in the medical field for the past 10 years I have to say PHA is a God send. I had the privilege of attending the PHA on the road in Orlando last year. WOW what refreshing change of paradigm of patient, physician, and pharmaceutical interaction. But most of all it is a great opportunity for me personally to interact with other care givers and PAH patients via the online chat. A year ago I was one who didn't know where the road was going to take us and now I find myself a unique position of knowing where the road could go and sharing it with others.
Again Thank You and PHA for all that you do to make things a little easier.
Anyone in the PH community can connect with a scheduled (or unscheduled) chat through the PHA website.
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