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Part 2 and a Connection

Jun 23

Posted by: ACHA
6/23/2014 12:52 PM  RssIcon

By Alissa Butterfass

First, an update: When I last blogged, it was weeks before an upcoming cardiac catheterization. My doctor was hoping to attain images and measurements not accessible in other tests, and I was hoping to finally get an answer to what my exercise limitations are, and whether I could actually try to take up running or participate in a half marathon walk with my cousin.

The catheterization took place in late April. Even though only diagnostics were performed and no interventions were necessary, the recovery was more difficult than I anticipated—a massive headache for three days, likely due to dehydration, and a sore leg at the site of the catheter placement for a week.

I was feeling better by the time of my follow-up appointment with my cardiologist, where he explained to me why I get out of breath so quickly during exercise. It was helpful for him to explain why this was happening anatomically. Less helpful was his response when I asked about any limitations on exercise. Rather than provide specific guidelines or rules, he repeated what I have heard so often already—to listen to my body and set my own limits accordingly. If I get out of breath, stop what I’m doing to rest. If I’m feeling good, keep going.

In some ways, I’d prefer to have some clear-cut rules to help me make sense and determine what I am capable of doing. Though, I imagine that if the cardiologist did indeed provide me with a set of restrictions, I’d be pretty upset about that, too.

Next, a new connection: This weekend I attended the funeral of a member of my husband’s extended family. Many of the deceased’s nieces, nephews and friends shared stories at the service, with a common thread about her wonderful and wicked sense of humor, her love of friends and family, and her appreciation of a great party. One speaker commented on her uncanny ability to connect people.

At a luncheon following the memorial, my mother saw a woman with a scar peeking out from the top of her shirt, similar to the way mine does. Never one to be shy, my mother approached the woman and asked if she had had heart surgery. When she found out that this woman, L., also had a congenital heart defect, my mom called me over to meet her.

L. immediately embraced me, exclaiming I was her “zipper sister.” I apologized for my mother’s brazen approach and she laughed, “I am proud of this scar. I am happy to talk about it.” Over the course of the afternoon, L. and I traded details about our surgeries and compared the stress of when your beloved cardiologist retires. L. had never heard of ACHA so we exchanged emails and I promised to share information about the organization so that she, too, could benefit from all of ACHA’s amazing work.

It occurs to me that our exchange weaves together all of the common threads spoken about at the funeral. We met at the luncheon celebrating the deceased (a great party she would have loved), where my mother (family) introduced herself, and later me (connection) to a fellow CHDer who laughed and joked about her scar (sense of humor)…. What an appropriate way to honor my relative and L’s friend, and how lucky we are that even in her passing, she was able to bring two zipper sisters together.

Alissa Butterfass was born with transposition of the great vessel, which was corrected with a Mustard procedure at age 2. In addition to being a mom, wife, daughter, sister, friend, wannabe author and chocoholic, she volunteers as the Co-President of her local chapter of a nonprofit organization. Until recently, Alissa worked part time as a senior marketing manager at a Fortune 500 company.

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