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Walking in My Shoes, Part 2
Walking in My Shoes, Part 1
CHD and the Law: The Heart of a Soldier
Top 5 Reasons to Attend the ACHA Conference
The Disclosing Decision
Not Your “Normal Holiday”
How Facebook Helped Me Get to (Cardiac) Rehab
Not My Average Heart Year
Tips for Cardiac Parents, Part 2
Part 2 and a Connection
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Disclaimer

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.

By ACHA on 5/27/2014 2:53 PM

By Becca Atherton

After the frustrations in my last post, the plans to go to the new hospital were canceled because I got the stomach flu. This weekend I am headed up to California for a quick doctor appointment and to see my brother's girlfriend graduation! (Note: this post was written and submitted last week before the trip.) I don't expect too many tests or big changes to come from the appointment. I am meeting with my doctor to ask him questions about the upcoming heart cath that the new hospital I wrote about it my last post wants to do.

By ACHA on 3/18/2014 1:07 PM

By Becca Atherton

A few weeks ago we got the good news that a hospital – although far from home – has agreed to evaluate me for a heart-lung transplant and see if they think they would be able to transplant me when the time comes. However, we haven't really heard from them for a few weeks now since the first time they called to talk to me about it.

At first we were told that the hospital was in-network with my insurance but now we are being told they still have to work things out with the insurance. My doctors in California gave the contact person my parent’s cell phone number as well as the home phone, but there was still an issue with a missed call left on our home phone.

By ACHA on 1/23/2014 1:15 PM

By Becca Atherton

Back in December I was medivaced from Phoenix to California because I was experiencing atrial flutter (AFL). The doctors were able to pace me out of it and I got to go home right in time for Christmas. But just two weeks later, I was back in AFL and had to fly up again. They were, once more, able to pace me out of it, and now there is a setting on my device that if I go back into AFL, my pacemaker/ICD will make a sound letting us know. On top of that, I was also started on a few new medications, one of which is Coumadin.

By ACHA on 11/8/2013 9:27 AM

By Becca Atherton

Turning 21 is considered a big milestone in a lot of people's lives, especially since it means you can now legally drink and buy alcohol. But for me, this birthday is a milestone for a completely different reason.

It was 21 years ago when I was born and the doctors discovered that I had serious congenital heart defects and pulmonary hypertension. I was born blue and since my mom didn't have any prenatal care for me, no one expected or had any idea that I'd be as sick as I was. Before my parents adopted me, they were told by a doctor that I had a 13% chance of living to the age of five. But after four open heart surgeries, 45 pills and two SVN treatments a day, three allergy shots once a week, five different hospitals, more than 20 heart catheterizations, a blood draw once a month, a pacemaker/defibrillator placement and countless doctor appointments—I have reached 21 years of age.

By ACHA on 8/19/2013 9:26 AM

By Becca Atherton

I've been struggling with some news that I got from two doctors of mine. It seems to be a recurring statement now that receiving a transplant when the time came would be too difficult and high-risk. A few weeks ago I got a call from my transplant coordinator. Hospitals have criteria when deciding who can have a heart transplant and she said one of these is that they usually like to have at least an 80% chance of surviving the transplant. Because of all the scar tissue I have in body, and something else called MAPCAs (major aortopulmonary collateral arteries), I only have a 50% chance of surviving the operation. We are having a difficult time getting a hospital to agree to perform the transplant when the time comes.

I hung up the phone and just cried onto my kitchen table. I've gotten bad news before, but my parents had always been there to hold my hand and comfort me. My sister questioned, "Why didn't you just ask her to call back?" Well, those of us who are in the medical world know how difficult and how long it takes to be able to get a doctor on the phone. So I told her that I didn't want to have play phone tag and I was tired of waiting—I wanted to know now.

By ACHA on 6/7/2013 1:13 PM

By Becca Atherton

It's pretty obvious when you meet me that I am generally a happy person. People have told me more and more recently how they love my sense of humor and my attitude about life. I've learned through my life that laughter does help you feel better—which probably explains why I love comedies, whether it's a TV show or a movie.

When people make weird comments about my scar (like the lady who thought my scar was a drink I spilled on myself), I usually don't get offended—unless they are purposely trying to be rude—and instead, I laugh it off and find it amusing. I'll go home and I'll tell my family about the newest and weirdest comment. We find humor in some of the things people say. Because if I didn't do that, I could have a chip on my shoulder from all the things people have said to me. But when I laugh it off and get a kick out of the stupid things people say, it makes for great stories!

By ACHA on 4/18/2013 10:52 AM

By Becca Atherton

If any of you follow me on Twitter, you may know that I was in the hospital. I was having irregular heartbeats and my heart rate was getting up into the 130s. On top of that, these episodes were lasting up to two hours. Needless to say, when that would happen, I would be exhausted afterwards. So while in the hospital, they put me on some more medication to help stop these irregular beats from happening. While these episodes are not dangerous or life-threatening, they were extremely uncomfortable and made me beyond exhausted.

By ACHA on 3/6/2013 2:44 PM

By Becca Atherton

Throughout my life, my health has taken away things in my life that other healthy people could do. But I noticed that there was a cycle. I gave myself a day or two to cry, scream, yell about how life isn’t fair and tell my parents that I just wanted to be normal. Then after I got it all out, I sucked it up and I did what I knew I had to do.

Well, yet another thing came up on Monday that I was not able to do. My friends at school are all going away on a three-day camping trip for Spring Break. Now I am going to be very honest with you, I don’t think I would like camping—not one bit. I like sleeping in a comfy, warm bed. They were going to be sleeping in tents. I like having heating and a running toilet. They would have a campfire and a place behind the bushes.

By ACHA on 1/15/2013 8:38 AM

By Becca Atherton

When I was younger, around elementary school age, I hated having a heart condition and a lung disease (pulmonary hypertension, or PH). I hated it because I couldn't run or keep up with the other kids at recess. I hated it because during recess, I wasn't able to play kickball or basketball.

Then I got a bit older, into the pre-teen stage, and I hated having a heart condition and a lung disease for a different reason. I hated how my scar looked. I hated the stares I would get. I felt ugly. I felt like I wasn't girly enough or feminine enough because of the scar in the middle of my chest. I felt like no guy would ever find me attractive because of the big pink scar. I hated having CHD and PH because of the scars.

By ACHA on 12/10/2012 3:47 PM

By Becca Atherton

Last night I went to my little sister's church choir concert and they sang this song at the end. I was so close to tears, as was my mom. I knew that I had to share this song with you all. It's called “Go Light Your World” by Chris Rice:

There is a candle in every soul
Some brightly burning, some dark and cold
There is a spirit who brings a fire
Ignites a candle, and makes his home

By ACHA on 10/24/2012 11:32 AM

By Becca Atherton

There is a saying that laughter is the best medicine. While I don’t think laughter can outperform modern medicine, I do believe that having a sense of humor and being able to laugh can help when coping with an illness such as CHD.

By ACHA on 9/17/2012 11:10 AM

By Becca Atherton

This Friday I will be traveling up to California to see my doctors there. Lately I have been having a lot of memory problems, which we think may be because of one my medications. The problem becomes, though, that this medication protects me from a certain type of arrhythmia and right now, we are not sure if there is a medication I could take besides this one that wouldn't have the memory side effects.

By ACHA on 7/17/2012 11:45 AM

By Becca Atherton

Performing American Sign Language to music has always been a hobby of mine, since I was nine years old. I usually try to pick inspirational songs and when DreamWorks’ Prince of Egypt animated movie came out in 1998, there was one song that really spoke to me that I think will also speak to a lot of CHD families and patients.

By ACHA on 6/8/2012 10:34 AM

By Becca Atherton

As all of you know, having a congenital heart defect means you have a scar—or a few of them. For the majority of my life, I haven’t felt too self-conscious about my scar. I like to thank the heart camp I’ve gone to since the age of eight for helping in that field. However, I won’t lie—when I started high school and my scar from my surgery in 6th grade was still bright pink and bumpy, I was self-conscious about it. I even went as far as to get special make up to cover it up.

By ACHA on 5/21/2012 11:03 AM

By Becca Atherton

This past Tuesday I went to speak to a local sixth grade elementary class about bullying. I talked about how people would call me lazy for using the elevator instead of the stairs, how people would call me ugly because of my scar, and how kids in middle school locked me in a closet and refused to give me my medication. I wanted them to know that bullying is never OK and that before they made assumptions based off of how people look, they need to take a step back and realize that there is more to someone than what meets the eye.

By ACHA on 4/5/2012 11:23 AM

By Becca Atherton

Hi everyone, I just wanted to give you all a quick update about the heart cath and pacemaker replacement I got a few weeks ago. During the cath, I had a horrible asthma attack and they had to give me a bunch of asthma medications while I was still sedated. The doctors took a look at some of the pressures in my heart and they aren't too happy about them. They are hoping, though, that it was just because I had eaten a bunch of salt the night before (I splurged! Haha.) and because of the difficulty with my asthma.

By ACHA on 3/5/2012 1:49 PM

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.

By ACHA on 1/30/2012 12:34 PM

By Becca Atherton

This past week, I went to a local elementary school to talk with third and fourth graders about my heart condition, bullying and how you can’t look at a person and think you know what they are like. I explained how with my heart defect, I look normal. Looking at me, people have no idea that I am sick. So when I walk slow or take the elevator instead of the stairs, they look at me weird or make comments. I also talked about when I was younger; even when I was in high school people would still make fun of me. The kids asked questions about my illness, how I coped with the bullying and then I got a question that I had never gotten before.

By ACHA on 12/7/2011 2:59 PM

By Becca Atherton

This weekend my family and I will have 300 or more people in our Arizona backyard for our annual Winter Party. The party was originally started about 10 years ago when my parents had snow brought into our front yard so I could see real snow, since going up into the mountains isn’t something I can do without oxygen. Family members and neighbors were originally the guests until we moved into our new house that can host more people because we have a larger backyard.

Now, thanks to a camp that I go to and several other CHD support groups, our party has become a huge get-together for kids with CHD and their families.

By ACHA on 11/14/2011 1:31 PM

By Becca Atherton

It was 19 years ago that I met a good friend of mine when we were both babies in the intensive care unit at the same hospital. Our parents had both been told that things weren’t looking so good for us.

Fast forward a few years. When we were eight years old we met again at a camp for kids with congenital heart defects. Every year we would see each other at camp, share funny stories, go kayaking and all around just got to feel like normal kids. FYI—two heart kids in a kayak is not a good idea. We kept running into boats and we didn’t go very fast since we both get tired easily! But we had a good time!

By ACHA on 10/13/2011 3:09 PM

By Becca Atherton

Hi everyone, my name is Becca. I love writing so I figured that I would start a blog and that since I am living with tetralogy of Fallot, pulmonary atresia and pulmonary hypertension I would write about being chronically ill.

I want to take my feelings and use the written word to transform lives and bring awareness to these diseases. I hope to impact people and let others know just how truly special people who are chronically ill are.