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Posts by Kelly Deeny

We have had dozens of bloggers since this blog began who have been so open with their stories. If you are interested in blogging, too, we'd love to hear from you. Please email info@achaheart.org.

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by Kelly Deeny on Tuesday, Sep 29, 2015

I used to respond to "Tell us something unique about yourself" with "Well, I had open heart surgery before the age of two." Now my response is, "I am a writer!"

It's been suggested that I tend to give too much power to my ailments and not enough to my positive attributes. Do I fall back on an event that left me powerless instead of one that made me feel strong and alive? Sometimes, yes, I do.

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Writing About My CHD Journey

by Kelly Deeny on Tuesday, Jun 30, 2015

I’ve been absent from the ACHA Blog for a bit, and there’s a reason for it: I ran out of things to “say.” Recently, every time I sat down to write a new entry and join my fellow ACHA bloggers in chronicling our CHD journeys, my mind went blank.

“What haven’t I written about yet?” I wondered. “What new perspective, insight, advice, or milestone do I have to share?” I felt like a broken record and all the drafts seemed inconsequential compared to those of other CHD survivors.

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An Artistic Heart

by Kelly Deeny on Wednesday, Jan 07, 2015

I’m a firm believer that the creative arts can help significantly during times of trial, struggle, and emotional/physical/spiritual pain. I make such a claim out of experience—personal and through numerous years of volunteer work. Currently, as I navigate a lapse in employment, I’ve turned to the arts as a healthy form of expression. I’ve been thinking a lot about just when and why my fascination with music, writing, theatre, film, and television began. In all honesty, my suspicion is that it started during my hospital stay as a congenital heart patient.

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Trusting Heart

by Kelly Deeny on Monday, Oct 13, 2014

A recent violation of my trust (minor, yet impactful) brought to the surface issues I long thought had been dealt with. Instead, I came to realize that my battles with depression and anxiety could very well be linked to my open heart surgery.

I wrote an earlier post about how my broken heart needed mending and became a reason for me to keep my emotional heart closed, even though the damage was repaired. What I hadn’t thought much about was the psychological ramifications that stemmed from the surgery itself.

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Depends on the Heart

by Kelly Deeny on Thursday, Jun 05, 2014

Dependence and guilt are two of the unseen side effects of my congenital heart defect, the ramifications of which still drive a great many of my choices/actions.

As children, we are dependent on others for almost everything. They feed us, clothe us, and provide guidance as we develop. Dependence on those who care for us is understandable and expected. All children must come to a point in their growth when they start relying on themselves. They trust their instincts, abilities, and knowledge. At that point, one more independent thinker helps our community grow and develop. They spread their wings and follow their dreams, all the while thankful and appreciative of the wisdom they received along the way.

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Fussing Over Your Features

by Kelly Deeny on Friday, Mar 28, 2014

I don't mind the scar down my chest. In fact, I accept it as part of what makes me unique. It's a reminder to me on stressful days of how much strength and determination exists within. Yes, it mirrors a heart that's endured physical pain, but the healed wound also signifies an emotional and spiritual journey that's had its share of challenges.

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The Healing Power of Creativity

by Kelly Deeny on Monday, Dec 02, 2013

I am scared of my heart, not only on an emotional level but also on a physical one.

As a congenital heart patient, I have to take care of my ticker. I should be eating healthy and exercising, both of which I do sporadically. I take my health for granted and sometimes it comes back to bite me in the...heart.

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Thank Goodness Summer’s Over!

by Kelly Deeny on Thursday, Oct 03, 2013

"There's a problem. You had an abnormal EKG." Those are words a congenital heart patient never wants to hear. Yet, that's exactly what happened to me about a month ago.

I had minor surgery at the end of August, one that involved the possibility of blood loss. As is standard procedure, I went for pre-admission testing a week beforehand. I actually made sure to mention that I was a heart patient, and they specifically did an EKG on me to be on the safe side. The following day I got the call that I had a right bundle branch block and that I needed to get approved by my cardiologist in order to have the surgery.

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Rising from the Ashes

by Kelly Deeny on Wednesday, Aug 21, 2013

Life never happens quite as expected. In my last ACHA post, I wrote about my plan to raise money for ACHA by walking a mile for every set amount (for instance, $20 or $25)—that I'd ask family and friends to donate in support of a worthy cause that means so much to me. Roughly a month later I needed their help, but not as I expected.

My apartment building caught fire, leaving all the residents of the building without a home. In a very short period of time I realized that for all the hurdles and struggles I face, I am strong. I am resilient.

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A Beautiful Time for a Walk

by Kelly Deeny on Friday, Jun 28, 2013

I feel incredibly guilty that I didn't participate in this year's Delaware Valley Congenital Heart Walk. There were so many goings-on that weekend and I missed a beautiful day. So, I've decided to start walking again.

A couple years ago, I found a fundraising website where you create a project and pick an organization to be the recipient of your fundraising efforts. I decided to create the Walking for My Heart project. For every specific amount of money donated ($10 or $25, I don't recall), I would walk one mile. I ended up raising enough money to walk eight miles thanks to my family, friends and colleagues.

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by Kelly Deeny on Tuesday, Apr 02, 2013

So, perhaps my heart’s not actually being torn in three places, but it’s the closest analogy I've got. On Sunday, June 9, there are three different events happening simultaneously and I haven’t decided which one(s) I’m attending.

The past two years I’ve been honored to participate in the Delaware Valley Congenital Heart Walk in support of the Adult Congenital Heart Association. I am proud to help bring consciousness to a cause that matters to me and to an organization that does tremendous work for those of us whose lives have been changed due to congenital heart defects. This year, the Delaware Valley Congenital Heart Walk is taking place on Sunday, June 9, and I’m not sure I’ll be present.

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Dancing to the Beat

by Kelly Deeny on Thursday, Feb 07, 2013

Perhaps you recall my mentioning that I hate exercise. Because I do. It’s effort. It’s work and all of my work ethic is focused on my career.

Having said that, I’ve found one form of fitness that I deem to be acceptable and even fun. I know, my family and friends probably rolled their eyes on that one but it’s possible. I…love…Zumba! Primarily because even though I’m moving for the full 45 minutes with sweat dripping off my body, I am having a good time. I am dancing, stretching and surrounded by others who are enjoying the class as much as I am.

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Hearts Full of Love

by Kelly Deeny on Thursday, Jan 03, 2013

Thirty-six, single and a congenital heart patient—I highly doubt that childbirth is likely in my lifetime. At least this go-round.

I love kids, don't get me wrong. They gravitate to me and I to them. I adore my sisters' children and find myself smiling at every little one I meet. My maternal instinct kicked in when I was still a child and hasn't dwindled in all these years. But even if I never give birth I will be proud and honored to remain Aunt Kelly...or one day adopt.

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Triple the Thanks

by Kelly Deeny on Wednesday, Nov 21, 2012

It warms my heart to know how many amazing friends I have! Each one brings something much needed into my life. The number of people I call “friend” is significant but their effect on my being is even greater. I could write for pages on just how remarkable each and every friend is to me but today’s blog post is dedicated to three of them in particular.

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Heart on My Sleeve

by Kelly Deeny on Friday, Oct 12, 2012

Actually, it's not just on my sleeve. It's prominently featured, like in the men made of tin and iron. It glows from within, guiding me along my journey. Sometimes it leads the way and other times I veer off-course so as to protect it from harm.

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“Dating” Your Doctor?

by Kelly Deeny on Monday, Aug 27, 2012

Choosing a doctor is as important to me as choosing a boyfriend. Stay with me on this...

With a boyfriend, I look for someone who’s thoughtful, open-minded and understanding. Someone who can see through my “I’m fine” responses and get to the heart of the situation. My doctor, no matter the specialty, must do the same.

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Love and the Heart: Literally and Figuratively

by Kelly Deeny on Tuesday, Jul 03, 2012

With every irregular beat of my heart I am surrounded by love. From my family, my friends and whatever religious/spiritual figure you call God or Goddess.

It’s interesting to me how we symbolize love, emotion and feeling with the heart. “It warms the heart” or “My heart is filled with so much happiness.” I don’t quite know why or how this connection came to be but I feel deep in my heart that we’re right!

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Celebrating Two Births

by Kelly Deeny on Thursday, May 31, 2012

I turned 35 two weeks ago. I have no problem telling people my age or making it known that it’s my birthday. Not that I expect everyone to be as excited as I am, but while many people dread the anniversary of their birth, I look forward to reaching a new milestone. I don’t mind getting older—it’s quite simply a celebration that I’m still here!

This week my youngest sister gave birth to a beautiful baby boy, who decided to arrive a week ahead of schedule. I have a feeling he’ll fit in very nicely within our family! As I held that precious child in my arms I thought, once again, of all those children born with a heart defect (myself included). I marveled at their strength, determination and independence. So tiny, yet so resilient. Fragile yet strong.

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Walking for the Cause

by Kelly Deeny on Friday, Apr 27, 2012

Walking: One of the few forms of exercise that I enjoy. When I walk, be it around my neighborhood, a local park or my office building, I’m able to enjoy my surroundings. It’s time to think, to ponder and to daydream. To get some “fresh” air and have time to catch up with friends and family. When I start thinking about walking for my health I recall how I came to become more involved with ACHA.

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Defective and Proud of It

by Kelly Deeny on Wednesday, Mar 28, 2012

I’m defective. Or so I’ve been told. While the initial response may prompt hurt feelings and/or shock, I accept it as truth. I have a defect—one that I was born with.

The word "defect" tends to inspire negative connotations, as though there’s something lacking. Sometimes it’s physical. Other times emotional or even mental. You’re labeled as “less than” when, in fact, we all have something that can be improved upon. There are those who’ve battled addiction. Others who’ve struggled with challenging weight issues. What some would determine to be defects, I view as simply part of an individual journey. Their lives are their own to live. They have choices to make just as I do.

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Hole-Heartedly: A Little Valentine’s Reflection

by Kelly Deeny on Friday, Feb 17, 2012

I have a confession to make—I am absolutely, positively, unequivocally a hopeless romantic! Phew…it feels wonderful to get that off my chest. I read romance novels, watch soap operas, love fairytales and believe in the concept of soul mates. If a support group existed for those of us with this “affliction,” I’d join in a heartbeat (pun intended). Maybe I’ll have to start my own!

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A Pledge to Stop Mistreating My Heart

by Kelly Deeny on Friday, Jan 20, 2012

I follow my heart most of the time. It doesn’t always serve me well, but I still let it guide me where it chooses. I trust it to know what’s best—to understand my limitations, both physically and spiritually. After all, it’s been through a great deal. It was in need of repair from the start, yet it held on. It kept beating. Kept me alive. It knew struggle and so have I. We’re a pair. It takes care of me. And yet...

I don’t always return the favor.

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Resolutions of the Heart

by Kelly Deeny on Friday, Dec 16, 2011

I am resolute about many things. My family. My friends. My artistic abilities. But my resolution for 2012 is to take better care of my heart—emotionally, spiritually and physically.

You may recall an earlier post I wrote about how much I detest exercising and eating healthy foods that taste like cardboard. I still think the latter holds true but I’ve also come to a realization—my heart is too important not to take better care of it. I am currently at a weight that I am not happy with. And as much as I would love to blink my eyes and have it disappear, I know I have to be proactive; I can’t sit and wish for my body to be as it once was.

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My Favorite Holiday

by Kelly Deeny on Wednesday, Nov 23, 2011

During this season we tend to stop what we’re doing and give thanks for what we have, the people in our lives and the blessings we’ve been bestowed. For that reason, Thanksgiving has become my favorite holiday. More than just the delicious feast or watching the many parades, I love this particular holiday because we get to take time out of our busy lives and just enjoy one another’s company.

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Imagining: Healing Slowly but Surely

by Kelly Deeny on Wednesday, Oct 26, 2011

Imagine being roughly a year and a half old and having your chest cracked open. I'm imagining it right there with you because even though I experienced that situation, I have no conscious memory of it. I can't even fathom what the recovery period must have been like at that age. I had my tonsils out two years ago and I thought that was painful! So how did I get through all that pain and heal when I'm sure all I wanted to do was cry and fight? According to my parents, I was quite angry with them. And rightly so! (Just kidding—sort of).

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ACHA Family

by Kelly Deeny on Friday, Sep 30, 2011

I’m a family-oriented person, always have been. I loved going to family reunions, visiting relatives and as of recently, doing genealogy research. As much as I adore my family I conversely believe that family doesn’t necessarily equate blood relation. Case in point—ACHA members.

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Heart Health

by Kelly Deeny on Friday, Sep 16, 2011

I have an aversion to exercise. I know, I know. I’m a heart patient. I should be taking great care of my precious ticker. But I really despise exercise just for the sake of exercise. Going to a gym, running on a treadmill or doing weights just isn’t motivating to me. For others it is but this is about me so…I hate exercising!

I was a tiny child. My parents had to beg, plead and prod me to eat. Eventually I caught on and cheese became my favorite food. Ah, dairy—I love thee! Growing up I was never overly concerned with fatty foods or how much mayo I put on my sandwich. I didn’t start putting on some weight until my high school years. Part of my slim figure could be due to my metabolism, but I truly believe it was because I was an active child. Afternoons were spent riding my bike, walking to my friend’s house or playing hide-and-seek. As children we loved being outside. That was fun for us! I often wonder if the same holds true for this generation of children.

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Past, Present and Future

by Kelly Deeny on Thursday, Sep 01, 2011

I’ve been thinking a lot lately about whether I focus too much on the past. On what I could’ve done differently. What experiences taught me certain lessons? It’s not just the negative memories I focus on, though. I think back fondly when recalling good friends, happy moments and exciting adventures. Truthfully, I think looking to the past can be valuable—in certain situations.

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No Smoking

by Kelly Deeny on Thursday, Aug 18, 2011

My beloved grandmother (aka Mom Mom) died of a heart attack when I was seven years old. I adored her. Loved her with all my heart. She was an incredible woman. One full of strength, love and unwavering support. But for all her tremendous attributes there’s only one that creates disappoint within me; she was a smoker.

It was the mid-80s, so smoking was still accepted most places, but when she died I lashed onto something to blame. And smoking became my nemesis. Even during a health presentation in elementary school I railed against it. Even if smoking didn’t cause her heart attack, it most certainly didn’t help the situation. And so, I vowed never to take up such a deadly habit.

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Writing Imprints

by Kelly Deeny on Tuesday, Aug 02, 2011

If you had told me that one day I’d write a young adult fantasy novel I would’ve said, “Wonderful! But I’d much rather be on Broadway.” Clearly, I’ve had a long-standing love affair with musical theatre—one which plagued me with hopes, dreams and doubts of my musical ability. So even though my writings were praised by loved ones and strangers alike, I didn’t value their importance in my life. I was going to sing on stage, not write! I didn’t fathom how the two would intersect so many years later.

In a previous post I mentioned my connection to the creative arts and how they helped me heal after my open heart surgery. Music may have been the initial form of spiritual healing but somewhere along the way writing became an even more powerful and instrumental tool.

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by Kelly Deeny on Thursday, Jul 21, 2011

Issues of body image have plagued me most of my life. Have I put on weight? Why can’t I be just a few inches taller? Why do I look like a cherub when I put my hair in a ponytail? And on and on…one could assume that having a large scar down your chest would affect my opinion of my body. And that it did. But, for the better.

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Music and My Heart: What a Pair!

by Kelly Deeny on Thursday, Jun 02, 2011

Music has been an instrumental—pun intended—part of my life since I had open heart surgery back in January of 1979. Not quite two years of age, I lay in a hospital crib waiting for my body to heal. Through what I can only guess were feelings of fear, loneliness and confusion at my situation, I do know one thing—my love affair with music began during that time.

I'm very thankful to have two parents who appreciate the creative arts. For whatever reason, they decided to play records for me when I was recuperating from my surgery. From what I've been told some of their choices included Disney albums and the soundtrack from “Grease.” Which explains a lot! Believe me, I consider myself a full-blooded Disney-fied girl and I know pretty much every word, spoken or song, of “Grease.”

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The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.