Friday March 2,2012
Registration begins at 10 a.m.
Breakout sessions begin at 10:30 a.m
Luncheon and program begin at Noon
Balboa Bay Blub
1221 W Coast Highway
Newport Beach, CA 92663
Kelly Perkins was going about the business of creating a good life with her husband, Craig, in Southern California. Their happy life came to an abrupt stop when Kelly found herself in the hospital with virally induced idiopathic cardiomyopahy and after an intense life or death three year struggle, her heart lost its battle with congestive heart failure. In November of 1995, while at UCLA Medical Center, she was the fortunate recipient of donor blood and a donor heart. This was huge, life changing! She said good bye to any kind of normal. Life was redirected; she found her purpose intention, and ultimately…a story! Since her transplant, she has gained international recognition for her remarkable courage and landmark accomplishments in climbing mountains—the first ever with a donor heart. We hope you can join us on March 2, 2012 to hear more about Kelly's accomplishments and her inspiring story.
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Get inspired. Get informed. Join health and fitness experts, medical professionals, and women like you to hear the concrete steps you can take today for better heart health.
Check back soon for details about our breakout sessions.
I am 33 years old now and the past 3 years have been a struggle to say the least. I was born with a complex congenital heart defect. I underwent surgery at a young age and the postoperative period initially was complicated by persistent A-V dissociation. My condition gradually improved to the point, that about 3 weeks after surgery my rhythm returned spontaneously to normal sinus rhythm." This was great news; I didn't have to get a pacemaker. From then on, I grew up playing sports like soccer, softball, dance, Cheerleader, tennis, skiing and anything else I wanted to do, just at my own pace and my own level. If I got tired, I stopped, if I couldn't run, I walked. I knew my limit and I never felt different.
In 2008, at a routine cardiologist appointment, the EKG results showed I was in Atrial Fibrillation. I was sent to UCLA to undergo a Cardioversion and also had a Trans Esophageal Echocariogram to look at my heat and figure out what was going on and where the problem lied. It was determined from my TEE that I was having circuit problems. The signal from my main sinus node was sending an unhealthy signal to the rest of my body which resulted in the Atrial Fibrillation. I was told I would have a revision of my original Fontan procedure as well as a Preventative surgical procedure called the Maze.
In January of 2009, I underwent a Fontan Revision and Maze Procedure and was wired again for a pacemaker but no pacemaker was implanted. Three weeks later, I was readmitted to the hospital because of adeama, fluid in my lung and a heart rate of 40 beats per minute. It was then determined I would undergo another open heart surgery to implant the pacemaker. The surgery was a success but the leads from the pacemaker in my abdomen are only pacing the upper chambers and not the lower. Pacing all 3 chambers would be most beneficial for ideal health.
It took me a whole year to really regain my strength and finally get back to myself. I was still not feeling as "normal" or as "good" as the doctors said I should be feeling, so I underwent another major surgical procedure. In the original Fontan, in 1983, my phrenic nerve was hit, which resulted in paralyzing my left diaphragm. From 4 years old to the age of 30, I never knew I only had 30% lunch function. It was advised of me to have my diaphragm placated down for full lunch function and ideal cardiac output.
From my emotions and my physical health spiking up and down it has been a bumpy road. I know that what I have gone through and what I will endure in my future makes me the person I am today who I am very proud of. My strong faith, along with family and friends has seen me through it all and I know without any of it, I would not have had the outcome I have. I feel better than I ever have before, I exercise on a daily basis, I love it even and I eat heart healthy to stay active and strong knowing that living with heart disease is only half the battle.
I have familial idiopathic dilated cardiomyopathy. That is a big, scary, medical description of a heart that is enlarged and doesn’t beat correctly. I come by it naturally. My father died of the disease in 1972 when I was 13. It was a tragedy and I grew up knowing that the possibility of my having the disease was 50/50. But grow up I did studying theatre in school, acting for a time and finally finding my true calling as an elementary school teacher. In 2002, life took a dramatic turn when my doctor, during a routine physical, told me that “something had changed”. That something was my heartbeat. I had lost at what I call “genetic roulette” and was now confronting a future with a heart disease that is both chronic and degenerative.
At the moment, things are good. I haven’t been in the hospital for over a year now and hope that continues for a long time to come since most of the last 10 years I have been in and out of the hospital in attempts to control my heart’s erratic electrical system. My problem first appeared as bradycardia. I received my first pacemaker in 2003; which helped, but then developed atrial fibrillation which, could not be controlled by medication. A series of cardioversions (nine to be exact) didn’t help and I also had several ablations. It was during one of these that my diagnosis was confirmed. This was a bitter moment for my family and for me as we knew all too well what this diagnosis could mean even with the advances in treatment since my father’s time.
There have been numerous complications along the way - congestive heart failure, cardiac arrest (thank goodness for brilliant doctors and the people they work with), emergency surgeries - but I have been graced with a loving family, good friends, and a strong desire to live life to the fullest. It’s not always easy. Like my father, I tire easily these days, I have to take many medications to keep my system in balance, eating as low sodium as I can manage and I now sport an ICD (termed my “insurance policy” by my cardiologist and the fourth device implanted since my first in 2003). Except for my heart, I am a healthy woman which helps a lot. I’m still teaching, still doing the things I love: sewing and needlework, enjoying time with my friends and family, traveling when I can, and even still figure skating a bit. Things just move at a slower pace for me.
No one knows what the future will hold. The medical decisions will come when they come. For my part, I try to do the right things to keep myself healthy. Diet, exercise and proper rest all play a role in in that. Through all the trauma of the last 10 years, I have never given up hope that things will work out for the best. I am just grateful for each day that I have. Cardiomyopathy or no, I have a lot of living to do!
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