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The Art of Coping

Mar 5

Posted by: ACHA
3/5/2012 1:49 PM  RssIcon

By Becca Atherton

In a little over a week, I will be having surgery to replace the battery of the pacemaker/defibrillator I had put in me about five years ago. I’ve had four open heart surgeries, more than 20 heart caths and the original surgery to implant the pacemaker/defibrillator.

Now, whenever I tell people this, I usually get the sympathetic look and a comment along the lines of, “Oh, well, I’m sure you’re used to it.”

But that is where they are wrong, very wrong.

As a heart patient, you don’t get used to having to fight for your life. Although I realize that there are different degrees of risk to each procedure, you don’t get used to hugging your loved ones for what might be the last time before you go under. I am not used to the fear or the anxiety that builds up inside of me as the surgery date approaches. I am not used to the idea of me possibly dying. You don’t get used to any of these things. You just learn how to cope with them.

I have learned how to deal with the horrifying reality of open heart surgery and all the things that come with it. Coping with these things do not equal being used to them. Not surprisingly, it seems like those who don’t go through it just don’t understand it. But maybe we can change that

Whenever someone makes a comment that is naive, just say, “No not really,” or “It is still scary.” Because that’s the truth. Open heart surgery, heart caths and all the other medical things we go through are scary. We don’t get used to them. We just cope with them.

Becca Atherton was born with tetralogy of Fallot, pulmonary atresia and pulmonary hypertension. She was adopted as a baby into a large multiracial family, where she is the second youngest. Becca was given a 13% chance of surviving to the age of five, but she is 19 years old and a college freshman at her local community college. She loves to read, perform American Sign Language to music and write on her blog.

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16 comment(s) so far...


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Re: The Art of Coping

Becca,

Best of luck to you! I have TOF too. I have had four open-heart surgeries in my lifetime as well. I also have an ICD that I got in 2010; so my battery is still good.

I'm 64 years old and I'm still kicking!

I wish you only the best! I'm sure you'll pull through this with flying colors!

Take care!

By John (Jack) Latsha on   3/5/2012 4:18 PM
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Re: The Art of Coping

I am a 41 year old with tetralogy of Fallot with pulmonary atresia. I'm on my second ICD and have had 5 surgeries and countless caths. You're right you don't get used to it. I have started to dread going to see the doctor now becuase I don't know what they will want to do next. I find I more fear the coming pain and discomfort then anything else. I've become tired, but I still fight. But I also know that what they have learned with me will help the kids today have it better then I did.

It is also fascinating to see how the science has grown up over the years. When I was younger the echocardiogram was a multi unit on a metal shelf that took almost one wall of the room. Today it is just a dinky laptop.

I wish you all the best.

Mike

By Michael on   3/5/2012 4:21 PM
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Re: The Art of Coping

I am 32 years old and born with Hypo Plastic Heart Syndrome and wasn't suppose to live past the age of 2. I have been under the knife several times and you never ever get use to it. Two years ago I had a ablation and hemorrhage and almost didn't make it. That wasn't the only time I have had close calls. In 1998 my right side of my heart enlarged and now I have only my left side. So you never get over the fear and the worry of yet another operation. Best wishes to you.

Emily

By Emily on   3/5/2012 4:55 PM
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Re: The Art of Coping

Couldn't of said it better myself Becca. I hate when people will tell me i should be use to any of it. Especially when they say I should be use to needles because I am so not. People just don't realize some times how traumatizing it all can be, especially growing up dealing with it all. Best of luck to you on your surgery coming up.

~Jenna

By Jenna Poole on   3/5/2012 7:23 PM
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Re: The Art of Coping

Best of luck to you! I know exactly how you feel. I also have TOF, 5 open heart and a biventricular pacemaker. I am 45 years old and doing well. Loved what you wrote...so so true!

By Lucia Evans on   3/5/2012 8:34 PM
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Re: The Art of Coping

Hey Becca,

Thanks for saying so eloquently what all of us CHD patients are thinking when others attempt to understand and/or comment on our cardiac experiences. As you know only too well, this past December, I myself experienced a hospital visit. It has taken me this long to truly get back on my feet. During this time I seemed to have lost your contact information. If you still have mine, please email. I would love to talk before your procedure. If that is impossible, all my best. I send love, prayers and healing energy your way. xx

By Lorie Hill on   3/5/2012 11:13 PM
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Re: The Art of Coping

Prayers from Kentucky sent your way.
Iam a heart mommy to a little boy born with HLHS.
The anxiety And fear never goes away. I always get people that say you are so strong and your son is such a little fighter! I always say I'm not that strong I have no choice and neither does he. But the fact of the matter is we are that strong and we do get used to things that would make an average person scream with fear. But the love we share with our family and friends is a love that is so deep and understood that many would never understand.
I pray tht you live a wonderful life full of joy. We will be praying with all our hearts for your speedy recovery. Judy and Noah

By Judy on   3/6/2012 9:53 AM
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Re: The Art of Coping

This raises a few questions I've had since I received my valve prosthetic:

1) This one was raised in one of the webinars but was never answered... how necessary IS the defib? Granted, it depends on the severity of one's specific condition. When they installed mine they explained that cryo-ablation would effectively eliminate any future v-tach. However, they justified its installation with 'just in case.' So does or does not ablation nullify v-tach?

2) The information that is downloaded from my defib, is it stored in a database somewhere and is that data part of some larger CHD study? I'm curious to know.

3) This one is a more philosophical question my doctor can't answer if he wanted to... how many times will I subject myself to these procedures? Rather, how many times can you cut into a person before they decide 'I've had enough of this' ?

By Matt K. on   3/6/2012 10:39 AM
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Re: The Art of Coping

Best of luck Becca, you are in my prayers. Please keep us posted.

By Tricia Zimmerman on   3/6/2012 10:41 AM
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Re: The Art of Coping

Hello Becca!!
I am 38 years old. I was born with Transposition of the Great Arteries. I had numerous open heart surgeries when I was a baby. Other surgeries to repair and fix. Plenty of heart caths. I am on my 9th pacemaker. I know how you feel and what you are going through. I worry about it more since I have become a father of 3. Before surgery dates, I get apprehensive. You never know. But if you have faith, and put yourself and the doctors and nurses in God's hands, he will take care of you. When I was born in 1973, the doctors told my parents that I probably would not see my 18th birthday. When I was 3 I recieved my first pacemaker. I have 3 sisters who have not heart trouble. I grew up in a small town where I was the only one that had a heart problem. Think good thoughts and keep praying. I will be praying for you. Best of Luck Becca!!

By Chad David on   3/6/2012 11:43 AM
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Re: The Art of Coping

Becca, Thank you for a beautifully written blog post and good luck on your battery replacement.

Matt, the questions have been submitted to the Valve Replacement Webinar presenters and once I have their answers, I will be sending them to all of the attendees by email.

You have asked some great questions and I would suggest that the best person to answer them would be your adult congenital heart cardiologist. Since there is inadequate data in the congenital heart world, sometimes there are no good answers! That's why we, at ACHA, have fought hard for the passage and funding of the Congenital Heart Futures Act which will finally provide the information necessary for better research.

Feel free to contact me at ACHA at any time.
Paula
Member Services Manager
ACHA

By Paula Miller on   3/6/2012 6:23 PM
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Re: The Art of Coping

Becca, you are an amazing young woman. I've had one open heart so far and got my pacemaker who I've kindly named Bentley last year. I understand that look that people give you, but what I've come to realize, is that yes while it is a fight for our continued existance, I'm proud to have it. I see that you are too. Part of our "normal" is not what others see. They don't see what we look like when we go to cath lab. They don't see us cry as we get ready for heart surgery, and you never quite get over that. Hang in there sister, there is a whole world still out there, and our fears are far outweighed by the simple love of life. Hugs to you girl and I'm so proud of you!!!!!

By Liz Berry on   3/8/2012 12:53 PM
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Re: The Art of Coping

I can totally relate to your story. I was born with TOF and have had 3 open heart surgeries. My last heart surgery was a pulmonary valve replacement adn I was 19 years old at the time. It was one of the hardest things to go through because I was old enough to understand what was fully going on. People still think I'm used to getting surgeries and can totally handle it, but it's totally true that I've just learned to cope. I still get scared that at some point I will probably need another one. Good luck with surgery. I'll pray that the whole thing goes well and recovery too!

By Babs on   3/9/2012 12:48 PM
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Re: The Art of Coping

Hi Becca. I too was born with tetrology of fallot, had open-heart surgery and a half a dozen catheter procedures. I'm on my fourth defibrillator and am due to get another soon. You said, "As a heart patient you don't get used to having to fight for your life." Well said! And you're right, it is scary, but you learn to cope, and it takes an enormous amount of courage to do that. Thank you for writing from and about your heart.

By Randy Hunt on   3/10/2012 7:23 PM
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Re: The Art of Coping

Hi Becca,
I have had two open heart surgeries and four ablations and you can never get used to it. You are a good fighter. We are all brave!!! It take a lot to be brave and go through all this. When I found out I had to go in again, I couldn't believe it but I knew what the outcome was when it was all finished. I think that is what kept me going!!! Good luck!!!!

By Michele Rothman on   3/11/2012 5:45 PM
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Re: The Art of Coping

Hey guys,

This is Becca! I am headed to California today and surgery is Thursday. I wanted to thank all of you for your support! I really appreciate it!! I'll be back soon, fully charged! Haha.

Love,
Becca

By Becca on   3/13/2012 9:12 PM

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