Sunday, May 4, 2014

Pulmonary Arterial Hypertension #worldphday

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/

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

My Superhero pose!!
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,

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  

Friday, March 14, 2014

Diane and her Heart Defect Research Quilt

Hello, March 14, Friday.
Wednesday I sent off the quilt to the winner, Mary D. I am sure it is going to a good home. :(
Sniff Sniff, missing it.  :)
I had Ma take one last picture, so you could see what it looks like finished, and a rod in the Rod pocket. But she isn't use to the new fangled cameras and chopped my head half off.
She hasn't taken many pictures since the days of her Brownie.
Diane and the Heart Defect Research Quilt
I have already heard from both organizations, ( CHP's foundation, and UPMC's Development office, for CVI)  and as soon as the monies clear out from Go Fund Me's  We Pay account, i will send off checks to both groups. My $1020, when withdrawn, minus the fees, came to $930.78. Fees than were $89.22,   8.74%. Which is about what they have in the FAQ's.
THANK YOU all for the Support, Donations,  and Love !!
Who knows, if able, maybe I will do it again in 2 years. BUT forget about those 89 little pieces, something a bit easier.

Love Diane

PS 
Plus, Cash on hand, checks, I never added into the G F M, in case they took fees out on it too. $121.
$1051.78  total
But WOW !! THANK YOU AGAIN!!

Wednesday, March 5, 2014

Heart Defect Research Quilt Mar 5 2014

Hello, March 5, 2014
WOW!! When I started the Heart Defect Research Fund, I expected it would really be like a "raffle", 100 people might give $5 or $10. But for Family, and Friends to gift more, WOW!! I am truly Blessed!!
I am almost to the goal of $1,000, in under a month.
After someone told me, they withdrew some of their monies in their account, of the $400, the amount in the checking account only was $364. The funding source, admits to a 5% fee, plus 2.9 % and $ .30 processing fees, but it was in reality, more like 12% fee. I haven't inputted the Cash on hand, not sure if it would be charged fees also. So I am in reality over my goal amount.
I have emailed both places for information on gifting, and haven't heard back. :(
I need to resend those emails.

The Quilt is almost complete. I had issues with how the binding turned under, over the Rod Pocket, and ripped it out, and resewed it, But I have the hand sewing half done.

WA LA, Rod pocket sticking out on the top, and Binding all stitched on.
The Label I stitched out with the machine, I thought came out well.
I need to hand stitch down the binding and rod pocket.
label stitched out with machine
THANK YOU ALL WHO HAVE SUPPORTED ME!!
http://www.gofundme.com/6psk18
WOW!!!
IT IS OVER!!
Love Diane


Wednesday, February 26, 2014

Heart Defect Research Quilt

Hello, Feb 26 2014
I think the  FEATHERED HEART APPLIQUE QUILT  is coming along very well. I finished the free-hand quilting, AND the Stitch in the ditch around the blocks. All that is left is the binding and the rod pocket. When there is a quilt show, it is usually required to have a 5" pocket in the back, for a way to hang the quilts. I don't think whoever wins this, will show it, so I am only going to put in a small pocket, for a thin rod, like a small wooden dowel rod.
After I hit the bottom with the Echo-stitching, I still had lots of room in the corners. Normally there would be stipple stitching in there, but my stipple stitching isn't very good. But then the Echo-stitching isn't so great either. As I go out from the center, my points and curved scallops got straighter and less loopy.
I did a small free- hand quilting practice run and told mom I was going to do that in the corners, around small hearts I was going to free-hand quilt. She said I shouldn't, Leave it be. BUT I did it any way. It came out pretty well. I only had to rip out one small part, when I messed up. That wasn't the first time, so no biggie.
So in the corners of the large big center block, I chalk marked around a small heart, stitched around it, plus 2 more times. Then I stitched off of it, and did some loops and did some heart loops. So look close at the free -hand stitching in the corners. I know, the lighting isn't very good, and the flash over exposing it.

Check out the corner where I did some hearts and heart loops.

After i took this, i finished the stitch in the ditch around each block.
I may still do a small satin stitched heart in the middle of each small heart applique, I haven't decided on that yet. Technically you are supposed to quilt to 5". This is from the old days when the batting would disintegrate, so you want stitching to keep it together, and in place.

Love ya diane

Wednesday, February 19, 2014

Heart Defect Research Quilt Feb 19 2014

Hello, Feb 19 2014
I worked hard on the Quilt today. I stitched around all of the 89 little pieces.
Sorry I took 4 pictures, 2 with the flash, and two without, none are really that good. I had hoped at least one would show the stitching a bit better.
Quilting around all the 89 little pieces
Maybe  if you click on it, and make it full size. It is AWESOME!!
The picture from the front, you can see the puffy ness around each piece.
Tomorrow and Friday I will work on the echo- stitching around the shape of the heart.
Heart Defect Research Quilt
Don't forget if you donate to my Heart Defect Research Fund, you have a chance on winning the quilt.
http://www.gofundme.com/6psk18

Thank You
love diane