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Highs and Lows

Oct 14

Posted by: ACHA
10/14/2011 10:34 AM  RssIcon

By Anthony Pugliese

The main reason and probably the best reason I can give for selecting the title of this post is that highs and lows are a natural part of life. I am not just speaking about medical issues here. We all have at some point in time in our lives experienced the highs and the lows. For example, being a straight A student and getting your first D, or the excitement of a first love and then the devastation of the first break-up. I think you get the picture. We all have highs and lows.

Now, being a person with a congenital heart defect, I know as well as most of you the highs and lows that we experience living with our defects. I remember a lot of lows growing up, especially when it came to being active.

I grew up in the late 60s and 70s, when those with CHD were always told to go at their own pace, meaning if you get tired, stop doing what you are doing and rest. This is easier said than done when you are playing a game of football or basketball with friends.

I remember some highs as well. The feeling I had after each one of my surgeries—the feeling that I was normal (whatever that meant). I was able to play and able to do the things that I wanted to do. There wasn’t a hill or mountain that I could not climb.

But the truth was, I was not normal. Eventually reality set back in and my heart would act up. I had about five years of feeling normal. Then the tiredness and the needing to go at my own pace kicked back in and during my college years I had my last surgery for my defects.

Once again I had the energy I needed to do the things I wanted to do. Then, after 13 years and just when my son was turning that age when little boys like to do things with their dad, I got hit again with the reminder that—at least for my little boy—he did not have a normal father. Fatigue set in and I would have good days and bad days. We tried to take advantage of the “good days,” which was nice, but nowhere near what a good day should have been. I was glad that the other dads in the neighborhood interacted with my son. While the bad days were a low spot, the other fathers added a high spot.

Finally, on March 26, 2009, I had a heart transplant. That was one of my ultimate highs. I say one of the ultimate because my wedding and the birth of my son come in among the top three; I am not going to rank them as I wish to remain on good terms with both my wife and son! So finally I had a so-called “normal heart.” What was I going to do? Stay tuned, because I will be back with other posts explaining and describing life with my new heart.

Anthony L. Pugliese is a congenital heart disease survivor, who after 44 years living with CHD, received a new heart. He will write about his adventures living with that heart. And keeping in that adventurous spirit, Anthony moved to Jerusalem, Israel, in August 2011.

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4 comment(s) so far...


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Re: Highs and Lows

just wondering (if you don't mind sharing) what kind of CHD do you have?

By joanne on   10/14/2011 11:24 AM
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Re: Highs and Lows

Yes I had Single Ventricle, Pulnomic Stenosis and TGA . I had 2. BT shunts 1 at 10 months old and 1 at 14 years and a Fontan at age 20. Went on disability at age 34 and got my new heart at age 44

By Anthony Pugliese on   10/14/2011 11:43 AM
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Re: Highs and Lows

Anthony- thanks for show us how it's done. You live life how it should be lived- to the fullest. I admire that you are always full steam ahead!

By Lena on   10/14/2011 1:53 PM
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Re: Highs and Lows

Thanks for sharing! I'm not a CHD survivor myself, but my daughter is. And as her parents we have experienced many of these highs and lows. She is also a single ventricle. Best of luck to you and looking forward to reading your posts about your new heart.

By Anne Curwen on   10/14/2011 2:52 PM

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