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YourHub.com \\ St Lucie West \\ Stories \\ Health and Fitness \\ Healthy Lifestyles

From my Heart to Yours, Have Heart!

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Contributed by: Dara (Chdmom) Glagola on 2/23/2009

It's been 2 years, Jan. 31st., since my eldest daughter Jara, passed away from a Sudden Arrhythmia of the heart, SADS it's called ironically...which stands for Sudden Arrhythmia Death Syndrome. Jara was 28, married for 1 yr and 10 days, waiting for a pacemaker / icd that never seemed to come due to scheduele conflicts. The day she passed, she would have been in the hospital the day before, possibly having a chance at life with her new husband and maybe even a family...but they changed it again, 8 days before to Feb27th. My daughter was a huge advocate for heart disease and stroke,you see, she had 25 of the known 35 heart defects, and also 3 strokes, 2 in the same day one hour apart! She had been the Red Cap Spokesperson for PA & FL Treasure Coast Heart Walk, the last time was in Sept 06. Her story is on GO RED for Women under "Imperfecthearts" and also her name. Imperfecthearts was and is the group she started, to help others who have a child, family member whith heart disease and need information, education or just a listening ear of a friend! Someone who has been through what she had, to help ease fears, to chase away the blues when your down, to be there for that person, who needs a helping heart, not just from a doctor who tells all the medical language that you don't understand, but, the way it is from someone who has been though it all, and Jara was! Imperfecthearts was a play on words, it means, "Even tho my hearts imperfect, I M Perfect!" Most CHD, Congenital heart disease children don't know anything different since they were born with their disease. so, to them, they are perfect!! As well as to us, the parents of these beautiful babies, children, sons and daughters!!They become our world, our life, even when we spend months in the hospital, where we get to know the nurses by name and the doctors on a first name basis too They become your friend and family! You learn to spend more time there than you do at home, when you have an ill child and your other children barely see you. The meds, the IV's. the pain you watch them go through, day by day. There is no cure, They cannot live without a heart, there are not enough organ donations of the heart to help and They cannot go into remission!!Cancer gets 5x's more monetary donations than heart disease does, and it, Heart & Stroke, are the #1 & #3 killers of babies, children and women. Women, Please GO RED and take the Cholesterol test, check your numbers.!! Jara made me, and I have it, mine was very high and I am thin!!
SADS, CHD & Stroke is not a laughing matter, ask anyone who has lost a child to it! Ask me, her father, her sister and nephew and her husband. It's time we let the public become more aware of these defects, they are the #1 killer of children and women today!! Jara and I made a list of questions to ask your Cardiologist, that the AHA in Stuart liked so much, we did let them use them and they are on the site. They changed theirs slightly, but did give the credit to Jara!! So, I am sharing the questions with all of you today! You can also Visit our site at www.imperfecthearts.com, Jara Glagola Gilbert Journey, which we are going non-profit to help other families of CHD Children. I have been the war veteran of CHD, Sads, for over 30 years now! I am a CHDMOM. Since Jara, we also found my youngest daughter and grandson both have it too. SO, please have your heart checked, your children if heart disease runs in your family and especially have a EKG done before your child plays any sports, even cheerleading to detect unknown heart defects and syndromes. Do you know if they have heart disease, many people don't!! There are too many children dropping over on the football fields today, and that is one too many for me! Please, don't wait til it's too late. ACT now!! Here are the questions:

11 Easy Questions to ask Your Cardiologist.. by Jara Glagola Gilbert.

1. What is the name of my heart defect or condition,and how rare of a defect is it?
2. Can you explain my condition to me in "layman's terms?
3. With my condition, can you outline what I should expect overal?
4. With my condition, what are some of the symptoms I should be aware of and/or expect?
5. What kind of blood work will I need to have and why?
6. At this time, what kinds of testing will I need?
7. What does each kind of testing mean and what's involved?
8. What are the types of medication that are used for my condition?
9. In "layman's terms," what do the medications I need, do?
10. Do my medications have any side effects that I can be aware of or expect?
11. (Depending on the heart defect or condition) Do you have a drawing or illustration of My Defect to better understand my condition? Or can you draw it out for me? (If a heart cath or EP Study has been done, ask for a copy of the heart drawing to keep with you at all times and also what is the Ejection Fraction (EF%) Percentage? That is the pumping power of the Left Ventricle, which does all the work of the heart!!)

Please also visit www.emergencymedicaltraveler.com, About Dara, save a life, maybe yours. COntact me for further info if you are interested in Fundraising, Retailing or helping us at Imperfecthearts, which all proceeds go to for chidlren of CHD.
If you would also like to join in the converstion and talk with others who have had surgery, heart defects, etc, please also go to Livejournal.com, search for Imperfecthearts under communities and log on! Or contact me, CHDMOM2@yahoo.com, for more information on how you can help make the public aware of SADS, CHD & STROKE! Today! So, from my heart to yours, Have heart, save a life, Have an EKG!! Dara
(In loving memory of my eldest daughter Jara, we Love & miss you!)

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