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Monday night with Charlie Gibson: WATCH

goingstrong
0 Recommendations

Watch for the 31 year old with heart disease. I hope this is the segment they filmed at our WH Symposium 2008 while I was there!
Lynn

Explore topics in this discussion:

Heart disease Beta blockers Memory Heart attack Obesity

44 replies

joy2day

And I hoped you guys wouldn't catch that.....

martzj

hahahha Peg!!!
" have to point out under your picture it states "other news video" and under that is "Topless coffee shop idea stirs debate" teehee. Whatever gets their attention Karla! "

I saw that too and laughed. Somebody needs to send that to Leno! Peg, are you truly going to apply? That would be just great. I hope I can work up the stamina for a week if my app is accepted.

Thanks Lynn for the encouragement. We'll be watching here for word you have found a way to start a local WH group.

Jaynie

Marietta

WONDERFUL STORY KARLA.....that was awesome. So proud of you and what you are doing. Keep it up.

Love...your heart sister....Etta

goingstrong

Peg, I'm putting you on MY list for 2009 Symposium appliers along with Jaynie and my friend Pat here in Houston. I will be doing ALL I can do to encourage all 3 of you to attend this year! Woo Hoo! (as long as all of you know MY list has no special pull with WH choosing THEIR list) ha

Lynn

heart39

Yay Karla!

Way to go in making this story local where you're likely to find even more personal interest. Right now I'm so proud to be part of a group of women that are making changes, not just talking about it. I hope to be part of the movement this fall. I wanted to apply last year but wasn't ready. I'll try this year for sure. I hope to meet Jaynie there!

I have to point out under your picture it states "other news video" and under that is "Topless coffee shop idea stirs debate" teehee. Whatever gets their attention Karla! Sorry, my sick sense of humor is coming out.

- Peg

martzj

Karla,

You're a terrific WH spokeswoman. My heart really went out to you as you described what life is like with an enlarged heart that just doesn't have enough room to pump with as much power as you would like. I think you will reach a lot of women who may have felt like giving up because of the huge fatigue from damaged hearts of all kinds, on top of the added mega dose of new fatigue from beta blockers and other life saving heart meds. Kudos on losing that much weight while living with heart challenges. I know how much that costs....and it is worth every ounce gone!!

Thank you for your comments,
Jaynie

Kennarina

Karla - wowee wow! That is great local coverage! Way to go!

XOXOXO

goingstrong

Way to go! I watched your promo and you did a great job! I'm mailing my letter to our local ABC tonight.

joy2day

Here is the link to a followup story on my local station

http://www.ketv.com/health/18423574/detail.html

joy2day

Jaynie,
There is a lot of good information on talking to our doctors at the Womenheart website.

Some tricks that I've learned from the women here and at the symposium. If your doctor advocates a "wait-and-see" approach to a vague symptom (and you are okay with this action), ask what you should do if the symptoms increase. Also ask what to do if the symptoms simply persist.

If you think that more investigation should be done, ask what the next step would be and some information on what changes would cause him/her to proceed with that next step.

ALL of this does require the patient to be firm but respectful (to a point) and to be prepared for the visit ... and to have a doctor who will treat you as you deserve. After all, it is your body at stake, not your doctors.

Karla

martzj

Oh my gosh Kenna,

I missed this on the first pass!! "It was also through a woman attending my first "P&P" party in November that I was able to make contact with local Emergency Room management, who subsequently invited me to be the keynote speaker at their annual ER Education Day in June - with 80+ hospital ER staff in attendance!!!! This is exactly my dream target audience.

Mine too!! Because they are the First Responders and soooooo critical in making seconds count. And because I got the EMT team from HELL (fighting with each other, not even touching me...I live 8 minutes from major hospital), I have always had this demographic on my mind. A lot of the stories coming through here start with EMTs dismissing symptoms...which has to come from the way they are trained.....which comes from the TOP.

You'll have an chance to put a buzz in their brains they won't be able to ignore ever again.

Jaynie

martzj

"Each of us can speak from our own experience with heart disease. That gives us the voice of the patient, not the well-meaning trained but never-been-there medical professional. Even those who ARE medically-trained can bring the personal perspective into their presentation."

Well said ladies! This is about FEMALE bodies period. So we 'lay people' need you insiders to help us understand how to best advocate for care...What we are up against....what might work, what is just a waste of precious time and energy.

THanks for all you are already doing!
Jaynie

joy2day

Lynn,
I think you have captured the essence how Womenheart is different. We are the National Coalition of Women WITH Heart Disease.

Each of us can speak from our own experience with heart disease. That gives us the voice of the patient, not the well-meaning trained but never-been-there medical professional. Even those who ARE medically-trained can bring the personal perspective into their presentation.

goingstrong

I think you are right! And Kenarina's idea of speaking to the ER folks is a great one! There were several of we 'medical' people there at the Symposium - I think they just wanted to be clear that it was NOT designed for medical folks - that they want LAY people to come too as all you need to be to qualify is to have had some kind of cardiac event!

martzj

Lynn,

For lay people only? But it is nurses that have the most one-on-one contact with long term cardiac patients. And I have been greatly concerned about the health status of so many nurses I see these days.....They are only offered part-time by the hospital so it didn't have to offer them health insurance. Nurses need help too. What about WH speaking to nursing classes on occassion? At teaching schools? I'm thinking out loud here. Nurses have a lot of patient impact. And we are all in this together.

happy quilting,
Jaynie

goingstrong

Jaynie, the questions you have about HOW to go about it are indeed part of what you will learn at WH Mayo! You will be such a wonderful adovcate. When they make that application available, you go girl! I think it was mid-Spring or so last year when they put a blurb here on the forum and I responded, never in a million years that I would be chosen because I am in the medical profession (NP) and they were very clear it was for LAY PEOPLE! When the notice didn't come in July as expected, I thought I had been un-chosen (ha) and then in early August, there it was! I had already dealt with my disappointment! ha

Do go! It's wonderful!
Lynn

martzj

Kenna,
" have been shocked so far by the general lack of cardiac awareness of most of the women in my presentation audiences - but I can guarantee you that by the time 20 women walk out that door after two hours at a 'Pinot & Prevention' party, they are no longer uninformed. Indeed, they almost always leave visibly fired up and keen to tell every woman they know what they've just learned. If that seems like just a Tupperware party ..... well, bring 'em on!"

First, I love your catchy party names....your PR skills are showing m'dear! You've got me thinking of doing this with my village book club...we're already sipping Pinot anyway!!! : ) Except when I'm hosting and I serve watermelon schnapps martinis....and of course, all my book club selections have WATER in the title.

Secondly, you are spot on. Where are women the most comfortable opening up to scary, intimidating, intimate topics?....in their own living rooms!! Because it is a 'conversational' setting and non-clinical, relaxed. SAFE.

I too have been both shocked and mystified at how pervasive denial is in the general population re heart issues. I think I need to apply for Mayo for help in reaching the 'HAs waiting to happen' people. You know....Do you lead with risk factors? Your own personal story? How do you tie in your story with the fact we are all on the HD continuum somewhere......etc? Lots of questions. No answers.

Personally, I would LOVE to know how the (Discovery Health Channel) 600 pound dude at the Brookhaven, NY Obesity clinic has NOT had a heart attack. I'm so confused......waaaaaaa : ) I was sipping tea and had a tiny cup of veggie soup the day I went into acute MI.....Gee, I so wish I'd been near my doctor's (who misdiagnosed previous HAs) Porche so I could've barfed all over the hood. That would have carved a lasting impression in his mind don't you think?....that young women do have HAs and they'll barf on your Porche if you don't catch it in time. He would have streamlined all future female patients with my complaints straight to cardio testing! : )

take care,
Jaynie

joy2day

This morning, I recorded an interview with the local ABC station. The reporter was astonished at the piece and seemed eager to build upon it. I also left her with several copies of literature from WomenHeart ... as well as a copy for the cameraman's wife.

martzj

Lynn,

Was that you waving a quilt around (kidding)! How fun to see the women we've been chatting with here. Your group photo was powerful, impressive....You are all so alive and vibrant! And RED! It was the first moment in my life I have ever seen a group of women who have survived major heart events.

I guess it is time to send in an application. Until I saw the ABC footage last night, I had been concerned that the Mayo WH symposium's main agenda was fund-raising...like AHA....rather than outreach, the ONLY thing I am interested in now. Seeing the cardio tours you were given, lectures, holding actual stents and pacemakers....That is 100 percent appealing. And I want to learn the best ways to speak to others about heart attack, etc.

Congrats on your big screen debut Ms. Goingstrong!!
Jaynie

Kennarina

Karla, your clip was awesome - especially that 'before' picture of you, girl! You are a stellar role model for women who decide to get serious about changing their lifestyle to improve their cardiac health. 150 pounds! That's like an entire person!

Like Nancy, I too was a bit disappointed by how SHORT and disjointed this little piece seemed, after watching the ABC News cameraman filming for hours throughout the last two days at our Symposium.

I also loved Carrie's 'Heartwarming' parties clip - and thanks for that name idea! I've been doing presentations at my evening 'Pinot & Prevention' parties, but didn't know what to call my DAYTIME events until now.


<< "...the only place they can turn to for outreach?????..........Going house to house? We have to go grass roots to spread cardiac education? Like Tupperware parties?...." >>

Yes, Jaynie, that is exactly the way we are doing this.

In a perfect world, all family docs, nurses, ER staff, and cardiologists would be properly and immediately educated about women's heart disease risks and symptoms - but until that happens, a grassroots approach can be brilliantly effective on so many levels.

For one thing, it's WOMEN themselves we want to reach just as much as front line clinical staff. Women like me, who didn't want to be a bother and instead lived in denial suffering horrific cardiac symptoms instead of screaming blue murder to demand care. Had I known before my heart attack what I'm teaching women now, I would have learned about being my own best advocate.

I have been shocked so far by the general lack of cardiac awareness of most of the women in my presentation audiences - but I can guarantee you that by the time 20 women walk out that door after two hours at a 'Pinot & Prevention' party, they are no longer uninformed. Indeed, they almost always leave visibly fired up and keen to tell every woman they know what they've just learned. If that seems like just a Tupperware party ..... well, bring 'em on!

It was also through a woman attending my first "P&P" party in November that I was able to make contact with local Emergency Room management, who subsequently invited me to be the keynote speaker at their annual ER Education Day in June - with 80+ hospital ER staff in attendance!!!! This is exactly my dream target audience. So, you never know how far the ripples of just going 'house to house' will spread.

As Margaret Meade wisely said: "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has."

XOXOXO

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