Wednesday, February 3, 2016

February is National Heart Month

Feb 3  2016
February is National Heart Month. I like to say it is Heart Defect Awareness month, but we really only get one week.
I have 3 heart defects, 2 defective lungs, Hemi-vertebrae=Scoliosis, and some other issues. For more information on those go to my very first post, it is MY story.
I have a Patent Ductus Arteriosis, Hypoplasia left Pulmonary Artery and Vein. 

I have a PA and PV, but they are so small, even the dr says absent. Because of the PDA, i have High Pressure in the Heart and Lungs, this is Pulmonary Arterial Hypertension. My PAH, is a more severe form, and I was diagnosed at age 10, Eisenmenger Syndrome. This is because the PDA has Bi-Directional Shunting. (Good and Bad blood mix) This sends Un-oxygenated Blood to my legs and feet. So i tire easily. AND most of the time i have Periwinkle colored toes. This is why Periwinkle is the "Color" for PH.
I also have Pulmonary Hypertension because of the Restrictive Lung Disease. This is very Rare to have both heart and lung PH.
I am on Tracleer for the PH, it is $10,000 a month. I was started on it in 2010. I feel i have reached a Plateau, but Doc doesn't feel it is time for a secondary drug. He says, the other meds have not been tested with Eisenmenger patients. He wants me to let him know when i feel i am declining, and he will consider it.
SIGH!! How do you feel and know you are declining?
It is so relative?

Love diane

#Cardiology, #CongenitalHeartDefects, #EisenmengerSyndrome, #NationalHeartAwarenessMonth, #Patent DuctusArteriosus, #Pulmonary Arterial Hypertension
#1in100, #CHDAwareness,

Monday, February 2, 2015

National Heart Awareness Month, Or Heart Defect Awareness Month


February 2 2015
Hello, It is National Heart Awareness Month, Or Heart Defects Awareness Month as I like to put it.

Some Heart facts/information::  I read, and share into several Support Groups, articles on Heart Defects, and Pulmonary Hypertension, almost every day. Here are some of  those selections.

I have an Interest List "Heart" set up with over 300+ Groups, Hospital Systems, Organizations, Non-Profits, all heart related. These Facebook pages adds into my feeds, and takes forever to scroll through. I also have an abbreviated one, I use most of the time. (I need to downsize it, but can't choose between deleting Rare Diseases, or Genetics)
""Cardiac disease patients bare scars for Kelvingrove exhibition
Friday 30 January 2015
SURVIVORS of congenital cardiac disease are baring their scars in a photo exhibition to raise awareness of heart conditions.
The Scarred FOR Life project will see a number of photos by Herald photographer Kirsty Anderson go on display at the Kelvingrove Art Gallery & Museum in Glasgow for a month from February 13....
Ms Wilson, who had open heart surgery in her early 30s, said the exhibition was being organised to raise awareness of congenital heart disease, which affects one in 125 babies....""
http://www.heraldscotland.com/news/home-news/cardiac-disease-patients-bare-scars-for-kelvingrove-exhibition.117378619

The Pulmonary Hypertension Association has a number of Webinars if you have PAH-CHD.
http://www.phassociation.org/Classroom/Landing/Recordings

AHA Journals Include: Circulation, Cardiovascular Imaging, and others. But the AHA do mostly Non Congenital Heart Defect Research. In other words, it is mostly Coronary Heart Disease. The Journals come out, at least once a month.
http://circ.ahajournals.org/
Then there are articles I wish I could read, but need to sign in to.
Achievements in Congenital Heart Defect Surgery: A Prospective, 40 Year Study of 7038 Patients
http://circ.ahajournals.org/content/early/2014/12/23/CIRCULATIONAHA.114.012033

The American Thoracic Society puts out a Journal, Chest, which I try to read regularly.
http://www.atsjournals.org/toc/ajrccm/current
https://www.facebook.com/americanthoracic

Hospital systems post articles about Patient stories.
http://intheloop.mayoclinic.org/discussion/courtney-kidds-long-road-to-a-normal-life/?linkId=12067626

Also reading the feeds for these 2 medical sites, every day.
http://www.medscape.com/
http://www.medpagetoday.com/

and trying to decide on entering this contest? They said, you don't have to have had Open Heart Surgery, just Heart Defects.
https://www.facebook.com/MendedLittleHeartsNationalOrganization/app_515720611858523

Thank You love diane

#Cardiology, #Congenital Heart Defects, #Heart Defects, #PatentDuctusArteriosus, #NationalHeartAwarenessMonth,

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