My other blog has some more information
http://dianehearthearts.wordpress.com/2014/05/04/pha-worldphday/?preview=true&preview_id=254&preview_nonce=2ca97d3df6
Scroll down to the beginning, for my story
Tomorrow, May 5 is World PH Day!! (PH= Pulmonary Hypertension)
here are some places to get additional information
@WorldPHDay,
http://respiratorydecade.blogspot.com/2014/05/world-pulmonary-hypertension-day-2014.html
http://www.phassociation.org/
Pulmonary Hypertension Association
http://www.phaonlineuniv.org/
http://www.phcentral.org/
Pulmonary Hypertension Association of Canada
http://www.phacanada.ca/index.php/en
Pulmonary Hypertension news
http://pulmonaryhypertensionnews.com/
Creating Awareness of PH in South Africa
http://www.phsa.co.za/runtime/popcontentrun.aspx?pageidref=2729
http://www.phaeurope.org/
Showing posts with label #Sometimesitsph. Show all posts
Showing posts with label #Sometimesitsph. Show all posts
Sunday, May 4, 2014
Monday, April 28, 2014
National Superhero Day #ytcHero
National Superhero Day #ytcHero
April 28 2014
Love this quote, but there are several variations.
"The object of lifes journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out, shouting, Holy Sh**, What a Ride!!!" — Mavis Leyrer, Seattle
also
""Life should NOT be a journey to the grave with the intention of
arriving safely in an attractive and well preserved body, but rather to
skid in sideways, Champagne in one hand - strawberries in the
other, body thoroughly used up, totally worn out and screaming
'Holy sh** - What a Ride!'" — Mavis Leyrer (octogenarian)
“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming “Wow! What a Ride!’”
It was said by the man — Hunter S. Thompson 1966
whichever??
“We've got some difficult days ahead. But it doesn't matter with me now. Because I've been to the mountaintop. And I don't mind. Like anybody, I would like to live a long life. Longevity has its place. But I'm not concerned about that now. I just want to do God's will.” ~Martin Luther King, Jr
A friend came to visit and took my for a ride on their bike. Had a Great time!!
Friends help make a difficult journey easier!!
love dek
#CongentialHeartDefects,#MultipleCongenitalAnomalies,
April 28 2014
Love this quote, but there are several variations.
"The object of lifes journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out, shouting, Holy Sh**, What a Ride!!!" — Mavis Leyrer, Seattle
also
""Life should NOT be a journey to the grave with the intention of
arriving safely in an attractive and well preserved body, but rather to
skid in sideways, Champagne in one hand - strawberries in the
other, body thoroughly used up, totally worn out and screaming
'Holy sh** - What a Ride!'" — Mavis Leyrer (octogenarian)
“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming “Wow! What a Ride!’”
It was said by the man — Hunter S. Thompson 1966
whichever??
“We've got some difficult days ahead. But it doesn't matter with me now. Because I've been to the mountaintop. And I don't mind. Like anybody, I would like to live a long life. Longevity has its place. But I'm not concerned about that now. I just want to do God's will.” ~Martin Luther King, Jr
 |
| My Superhero pose!! |
Friends help make a difficult journey easier!!
love dek
#CongentialHeartDefects,#MultipleCongenitalAnomalies,
Pulmonary Arterial Hypertension and Me
May 5 is #WORLDPHDAY .
http://www.worldphday.org/Homepage
To spread awareness, we were asked to post information, email or message news outlets our stories.
In Addition, we were asked that ::
Public service announcements (PSAs) focused on Pediatric PH Research, Early Diagnosis, and the work of the PHA are being sent out to approximately 10,000 national radio and 4,000 television networks across the country on Friday 4/25 at 9am ET!
The spots are titled: “Pediatric PH Research,”
https://www.youtube.com/watch?v=6dvEd1Snkfk
“Sometimes It’s PH,”
https://www.youtube.com/watch?v=K0bV_X1QL0s
and “What Is PH?”
https://www.youtube.com/watch?v=ImX29tKTqCc
We need your help to get these PSA's from station managers’ fingertips and on the air! Contact your local news stations and ask that they broadcast these PSA spots.
My Doctor Mathier
https://www.youtube.com/watch?v=Y28cLa7NN1k
My story, is RARE!! I was born with Multiple Congenital Anomalies, I have PAH, because of the heart and lung defects. I also have Hemi-vertbrae Scoliosis. I officially have had PAH since my Heart Catheterization when i was 10, in 1967. At that time my pressures were 90, normal is 25. In 2010, when they finally put me on Meds, the pressure was 160, dr said, that was one of the highest levels he has seen. My Meds come to my via a speciality pharmacy, UPS brings them monthly. Thankful to my #UPMC Medicaid, they cover the $100 a pill, $6,000 a month bill.
Because of the heart, lung defects, and PAH, i never had energy, always getting out of breath, last to be choosen in games. The Meds help some. They are talking about adding a secondary drug, which runs about the same $$.
I have refused the lung transplant, don't feel that is for me. I spent a year flat on my back when I was 12, undergoing the Scoliosis -Halo-Femoral Traction.
I keep busy, make quilts, do Advocacy for Heart Defects and #PAH.
love diane
#CHDAWARE #PAHAWARE
http://www.worldphday.org/Homepage
To spread awareness, we were asked to post information, email or message news outlets our stories.
In Addition, we were asked that ::
Public service announcements (PSAs) focused on Pediatric PH Research, Early Diagnosis, and the work of the PHA are being sent out to approximately 10,000 national radio and 4,000 television networks across the country on Friday 4/25 at 9am ET!
The spots are titled: “Pediatric PH Research,”
https://www.youtube.com/watch?v=6dvEd1Snkfk
“Sometimes It’s PH,”
https://www.youtube.com/watch?v=K0bV_X1QL0s
and “What Is PH?”
https://www.youtube.com/watch?v=ImX29tKTqCc
We need your help to get these PSA's from station managers’ fingertips and on the air! Contact your local news stations and ask that they broadcast these PSA spots.
My Doctor Mathier
https://www.youtube.com/watch?v=Y28cLa7NN1k
My story, is RARE!! I was born with Multiple Congenital Anomalies, I have PAH, because of the heart and lung defects. I also have Hemi-vertbrae Scoliosis. I officially have had PAH since my Heart Catheterization when i was 10, in 1967. At that time my pressures were 90, normal is 25. In 2010, when they finally put me on Meds, the pressure was 160, dr said, that was one of the highest levels he has seen. My Meds come to my via a speciality pharmacy, UPS brings them monthly. Thankful to my #UPMC Medicaid, they cover the $100 a pill, $6,000 a month bill.
Because of the heart, lung defects, and PAH, i never had energy, always getting out of breath, last to be choosen in games. The Meds help some. They are talking about adding a secondary drug, which runs about the same $$.
I have refused the lung transplant, don't feel that is for me. I spent a year flat on my back when I was 12, undergoing the Scoliosis -Halo-Femoral Traction.
I keep busy, make quilts, do Advocacy for Heart Defects and #PAH.
love diane
#CHDAWARE #PAHAWARE
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