Recent Entries
Summer Vacation: Tips for Traveling with CHD
How Do You Start Your Morning?
Balancing Parenting & Congenital Heart Disease
The First Five Years
My Journey to a Grateful Life
Now What?
Medical Home Sweet Home
Still Cliché’?
To My Village: Thank You
Education is Key in Spreading the Word about CHD


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.

When the Solution Is the Problem

Jun 10

Posted by: ACHA
6/10/2013 12:26 PM  RssIcon

By Clare Almand

Last year, I received a letter from the company that manufactures my ICD informing me that there’s a 1 in 9,000 chance that I have a defective device. Not enough of a problem that it demanded a recall, but just something that I should be aware of. The “defect” that my device might have would result in the battery depleting to 0 suddenly.

For someone who needs the device for the defibrillator only, it may not be an immediate crisis. But for someone like myself, who needs the device to pace my heart constantly and has needed this for more than 15 years, a defect of this magnitude would cause me a lot of trouble.

So what to do? Since my heart condition is almost always on the back burner, I read the letter and went on with my life. But upon visiting my cardiologist, we got into a discussion about what would be best for me considering my independent lifestyle in New York. And the weirdest thing resulted from this discussion: I was given a CHOICE. I have never been given a choice on whether or not I wanted surgery. It was always a “you need this or you’ll die” situation, which makes the decision a lot easier.

I have written before about wondering what it would be like if my battery did suddenly die—would I be able to walk around and get to a hospital by cab, instead of calling an ambulance? My cardiologist believed with my particular heart condition, I might become unconscious immediately and if I were in the subway or on the street somewhere, it could become very dangerous for me.

That was a bit of a wake-up call, pulling me out of “my-heart-condition-isn’t-really-a-big-deal” fantasy that I so often slip into. So I chose surgery. Because who wants to suddenly collapse on a New York City subway platform? They’re so dirty.

I spent a couple weeks getting up the courage to tell a few people I work with about the situation. I had scheduled the procedure (technically, it’s not “surgery,” but if I get cut open and someone puts a metal battery in my chest and connects it to my heart, I’m calling it surgery) for a month in the future. And I finally got myself a proper medical alert bracelet.

Once everyone in my life who needed to know what was going on was informed, I got some surprising but great news: The procedure might be more trouble than it’s worth. My surgeon informed me that the newer ICD models (mine is three years old) have only slightly better odds of not being defective. Also, the first year with the device can be the most problematic, so having already passed that first year, it would increase my chances of having a problem to have a new device put in.

I’m very fortunate, once again, to have averted a potential medical disaster (because almost all of my experiences in the hospital are disasters—I’m really quite difficult). I’m grateful to my cardiologist, surgeon, and all other cardiology personnel who keep me on track and make sure I never forget what it means to have complex congenital heart disease.

Clare Almand was born with Shone’s syndrome and has undergone a repair for coarctation of the aorta, multiple atrial septal defect and ventricular septal defect repairs, aortic valve replacement and an implantable cardioverter-defibrillator implantation. She has a B.A. in Media Arts and Design with a minor in Creative Writing from James Madison University. Clare works at a TV production company and writes screenplays in her spare time. 

Copyright ©2013 ACHA

Tags: Clare Almand
Location: Blogs Parent Separator ACHA Blog

3 comment(s) so far...


Re: When the Solution Is the Problem

Since you admit to being "quite difficult" I thought you might like this quote.

"As we advance in life it becomes more and more difficult, but in fighting the difficulties the inmost strength of the heart is developed."

Vincent Van Gogh

This must be why you are one of the strongest girls I know and love. You are so full of heart Clare, and I am so glad you got to dodge this surgery!

By Trish on   6/11/2013 8:26 AM

Re: When the Solution Is the Problem

Thanks for sharing your most recent journey and know that YOU have SO MANY FANS/FAMILY/FRIENDS in your corner (:

By Darby and Gene Flood on   6/12/2013 8:27 AM

Re: When the Solution Is the Problem

OMG! I am glad you are ok, but I had to laugh out loud when I read, "...would I be able to walk around and get to a hospital by cab, instead of calling an ambulance?..."
I also have Shones, and about 6 months after my last major surgery (aortic valve replacement, mitral valve replacement and sinus of valsalva aneurysm repair) I had a severe episode of tachycardia and my heart was racing at 254 bpm, and I miraculously never lost consciousness. I spoke to my cardiologist when it first started and he said to get to the ER, so, walked a block to the cash station, then walked around a block to catch a cab going in the right direction and got to the ER that way. Well, my doc had called the ER and they were expecting me to arrive via ambulance. My doc still shakes his head in disbelief, as do all my family/friends. I live in Chicago, much like NYC, you don't want to lose consciousness on the street - hence I thought a cab was safer - not for a second did I think to take an ambulance.

Like I said, glad you are alright. So nice to read about someone else having Shone's. I feel so alone in this journey sometimes.

By Yvette on   6/24/2013 4:03 PM

Your name:
Gravatar Preview
Your email:
(Optional) Email used only to show Gravatar.
Your website:
Security Code
Enter the code shown above in the box below
Add Comment   Cancel