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“Healthy Enough”
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
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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 6/23/2014 12:52 PM

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.

By ACHA on 4/8/2014 8:49 AM

By Alissa Butterfass

It all started with a simple question to my cardiologist: “Do you think I could train for a 5K run?”

I have always been a walker. Come the warmer months, I lace up my sneakers and walk around the park or the neighborhood. When I am being good about my fitness, in colder months I will hop on an elliptical. But walking always felt kind of “lame” and I thought that if my heart could withstand the exertion and I could build up to a point where I didn’t get out of breath so quickly, I would enjoy running much more than walking. So on my most recent visit to the cardiologist I posed the question.

By ACHA on 12/10/2013 1:20 PM

By Alissa Butterfass

This is the season when many of us, our friends and our family open our hearts and wallets to donate much-needed funds to those causes most important to us. If you are like me, there are probably several charities and organizations that you want to support—and if our pockets were deep enough we’d give to them all. So today I want to share why ACHA is one well-deserving organization to which I donate year after year—and I hope you will too.

By ACHA on 9/23/2013 1:54 PM

By Alissa Butterfass

I’ve written before about speaking with my kids about my heart condition, but as a parent of young kids it is really hard to discern what my 4 ½- and 7 ½-year-old truly understand about it. Or about my younger son’s birth through gestational surrogacy (which I wrote about here and here). My husband and I have generally taken the approach of just incorporating the topics when appropriate—not to hide anything but not to sit the kids down and have “the talk” either.

By ACHA on 7/22/2013 2:27 PM

By Alissa Butterfass

The other night my husband and I were watching the television show Restaurant: Impossible—Chef Robert Irvine visits a failing restaurant and over two days works with owners, chef and staff to revamp the business. In this episode, the restaurant's owner expressed doubt that her party boy son, who served as the restaurant manager, could change his ways to become the responsible adult necessary for the job. When my husband lamented that the mother didn’t have faith in her son, I said, well, it’s really hard for a person to make such a drastic change. My husband smirked at me asking, “And how would you know?”

I know because I am in the midst of drastic change.

By ACHA on 5/22/2013 1:17 PM

By Alissa Butterfass

It’s 11:22 a.m. and I am at 7,520. Steps, that is. I’m back to counting steps and points and pounds and ounces, in my seemingly never-ending challenge to get down to a healthier weight. When I first started in January, I was just minding my eating – trying to eat healthier, snack on veggies instead of cookies, and drink more water.

Next, I found my pedometer and started wearing it daily. I loved to see how high I could get it to go during an average day. Rather than make my son get his own sweatshirt, I’d offer to get it so that I could add a few more steps to my count. But no matter how many times I ran up and down the stairs fetching toys, books and sneakers for my kids (which they really should be getting for themselves anyway), I was barely reaching 5,000 steps. I knew what I had to do if I really wanted to slim down.

By ACHA on 4/15/2013 1:19 PM

By Alissa Butterfass

Recently I read a memoir by a man who was a year ahead of me in high school. At age 19, he was paralyzed when a truck slammed into the bus he was riding. The author decided to write the book as what he termed his “half-life date” approached—the day when he would have lived exactly half of his life pre-accident and half post-accident. Throughout the book, he reflects on what his life was like before the accident, and describes how life has changed for him since then. As I read Half-Life: Reflections from Jerusalem on a Broken Neck by Joshua Prager, a few ideas struck me in particular.

By ACHA on 2/22/2013 10:00 AM

By Alissa Butterfass

Unsure what to write about today, I went to my oldest son’s room and asked if we could talk. Though I promised he was not in any trouble, my almost-seven-year-old still was none too pleased to be pulled away from his Legos. When he finally came to sit with me, I asked him about my heart condition – what did he think it meant? His answers were telling: “It means you can’t run too fast cause you’re old” and “You have to take Lactaid pills to eat ice cream.”

Hmmm… not quite. I certainly wasn’t expecting M. to fully understand what my heart condition was. But since I spend so much time worrying about how my condition impacts my children’s lives, it was a relief to hear that it is not even on M.’s mind.

By ACHA on 1/9/2013 10:23 AM

By Alissa Butterfass

As I write this, it is 8 p.m. on Monday, January 7. Four years ago tonight, I was in an Atlanta hotel room in anticipation of my gestational carrier’s induction the next morning at her local hospital. Unbeknownst to me at the time, that night in New York my best friend from college unexpectedly fell ill and was taken to her local hospital emergency room, where she died. My husband, parents, brother and friends lovingly kept the shocking and sad news from me—no easy task in an era of email, texts and Facebook—until after my son S.’s birth the next afternoon, January 8.

As a CHD patient, I had often joked that I was “born brokenhearted.” I certainly suffered my share of romantic heartbreaks during my dating years. And I have lost dear, much-loved grandparents whom I miss terribly. But it was when my son was one hour old, and my husband told me that my friend Lisa died (he had to… I was about to try calling her to let her know about S.’s arrival) that I think I really felt “heartbroken” for the first time.

By ACHA on 12/5/2012 1:25 PM

By Alissa Butterfass

Last month, I had an MRI. It wasn’t my first, though I can’t remember if it was my second, third or fourth (ugh, aren’t I too young for a “senior moment?”). For those of you who have never had this test before, I’d describe it as “definitely not pleasant but definitely not as bad as you think it’s going to be.”

The most common question I’ve gotten about taking an MRI is, “Did you get claustrophobic?” Not really. Here’s my trick. I closed my eyes before going into the machine and did not open them—not even for a second—until after I was out of it. Between the movement of rolling into the MRI and the change from light to darkness that I could sense even with eyes shut tight, I knew exactly when I was in the machine. But I did not realize that the tube was just inches away from my face (or so I’ve been told) and did not get the panicked “get me outta here” feeling. Phew.

By ACHA on 10/23/2012 12:08 PM

By Alissa Butterfass

For those of you who are regular readers of the ACHA Blog, you may have noticed a subtle change in my bio. Two months ago, I left my professional, paying job to stay home with my kids. After 13 years at the same company, six of them as a “working mom” (a term I use only to facilitate writing this post, not to make any implications or judgments about mothers who do or do not have a paying job), it has been an adjustment for me and for my family. But so far, so good. Some thoughts and observations:

By ACHA on 9/13/2012 11:07 AM

By Alissa Butterfass

As I write this, it is 9 p.m. on September 11th. Eleven years ago, I was on my way to work at the World Financial Center. I exited the subway train at the World Trade Center station only to be rushed by a police officer to the street-side exit, away from the exit that led to the two towers. My initial thought was that there must be a mugger with a gun in the station. If only…

I wasn’t going to bring up September 11th to my kids quite yet, but at dinner my 6-year-old son asked if I knew that today was a holiday. I asked what holiday and he told me it was the day we remember the fighting in the two towers.

By ACHA on 8/1/2012 11:07 AM

By Alissa Butterfass

In July my family went on vacation. As usual, I was the designated packer. I was smart enough to make a checklist two days before the trip and organized enough to pack the kids’ stuff the day before we left—remembering everything from bathing suits and goggles to toys and stuffed animals, even Children’s Tylenol, Benadryl, and Motrin.

The day of our trip, I finished packing everything else—clothes for me and Hubby, an assortment of suntan lotion, saline solution, and more. I was a veritable packing machine. By 11 a.m., we were on our way. Woo-hoo!

By ACHA on 5/10/2012 12:53 PM

By Alissa Butterfass

In honor of Mother’s Day, I interviewed my mother Nora Wiznitzer Stonehill about being a parent of a child with a CHD. Below are condensed and edited highlights of the conversation. Note: I am not a professional transcriber so I hope this captures my mother’s intent, if not her actual words. Many thanks to my mom for her honesty and candor during our conversation.

By ACHA on 4/2/2012 12:12 PM

By Alissa Butterfass

This past week, I was inspired by someone I don’t know, never met, and never even heard of until Wednesday. A friend of mine posted on Facebook a link to an article about a friend of hers who worked with a well-known beauty company to launch a limited edition nail polish color in memory of her friend Jennifer Goodman Linn, who passed away from cancer last summer. I saw the Facebook post, clicked the link to Jennifer’s blog and began to read the story. And, I couldn’t stop reading.

By ACHA on 2/15/2012 1:19 PM

By Alissa Butterfass

If you’ve read my previous posts, or at least my bio at the bottom of this one, you know I am a self-proclaimed chocoholic. I also don’t really like to exercise. You can do the math: Chocolate + (No)Exercise = OVERWEIGHT.

Well, I am now officially five weeks into doing something about it. Woo-hoo!

By ACHA on 1/12/2012 3:01 PM

By Alissa Butterfass

On my first date with my husband, he took me to a restaurant on the Upper West Side of New York, we discussed his upcoming vacation, and he told me he loved to cook homemade pizzas and apple pie (both of which he wouldn’t cook for me for nearly a year, by the way).

But this post isn’t about my first date with my husband. It’s about the last first date I had before I met my husband.

By ACHA on 12/14/2011 11:26 AM

By Alissa Butterfass

My high school yearbook quote was, “Love makes the world go `round but laughter keeps us from getting dizzy.” I’ve watched Saturday Night Live since I was five years old, somehow convincing my babysitters that I was allowed to stay up late for it. I worked at Comedy Central for three years. Suffice it to say, I love to laugh and to find the humor in any situation. In that spirit, I thought I’d share a few funny moments in my CHD history.

By ACHA on 11/22/2011 12:07 PM

By Alissa Butterfass

A few months ago, a Facebook friend posted the following quote (I may be paraphrasing; it’s been a while): If you and your friends could throw all your problems in a pile and could instead pick out anyone else’s problems, you’d always choose your own.

I completely believe that’s true. Everyone is dealing with something. Some people’s problems are more obvious. Others may lie deep beneath the surface. I know women my age who have battled breast cancer. Faced fertility issues. Suffered the death of a parent. Endured divorce. Dealt with a lost job. The list goes on and on. Even those people whose lives seem perfect or who—more annoyingly—tell you their lives are perfect, have issues. I promise.

By ACHA on 10/28/2011 12:18 PM

By Alissa Butterfass

As I write this, it’s a Sunday night. My family is just back from a long weekend in Florida. In just three days, we found time to build sandcastles on the beach, splash in the pool, eat some good Cuban food and hang out with my cousins. I even got in two good games of Scrabble with Grandma. Aside from my 2-year-old vomiting on me during the turbulent landing at LaGuardia, it was pretty close to perfect.

Except for one thing...

By ACHA on 10/3/2011 11:35 AM

By Alissa Butterfass

This past week I celebrated Rosh Hashanah, the Jewish New Year. The holiday service includes many beautiful prayers and many harrowing liturgies, and reciting them makes me think about the year that has passed—my accomplishments, my missed opportunities, my goals—as well as my hopes for the upcoming year. Whether or not you are Jewish, it’s never a bad idea to reflect on the past year and think about the year ahead. Here are some of the thoughts that went through my mind this week.

By ACHA on 9/19/2011 9:45 AM

By Alissa Butterfass

It was bound to happen. After writing in my last post that I always have so many ideas of what to write about for this blog, this time I was stuck. (I believe in the jinx—I should have known better!) Last weekend, I considered writing something about 9/11. Like Stephie, I was at the World Trade Center that day, but after reading her post, I wanted to come up with a new idea. Then I thought about writing about my (negative) attitude toward exercise, but Kelly beat me to it. Even a few hours ago, I wasn’t sure I’d meet my deadline.

By ACHA on 9/8/2011 12:08 PM

By Alissa Butterfass

This is my seventh posting for the ACHA blog. For the first time outside a class setting, I have committed to and actually followed through on writing regularly. As it says right in my bio below, I’m a wannabe author. The only problem was that I wasn’t writing. Sure, I was great with a rehearsal dinner toast or a 40th birthday roast. I had taken a few fiction and memoir writing classes, loving the short in-class assignments but struggling with larger homework pieces. And, I never really sat down and wrote just to write. I hadn’t even kept a journal since studying abroad my junior year of college.

I was starting to think that maybe I wasn’t meant to be a writer. Maybe being an avid reader and a lover of the written word just wasn’t enough to actually make me a writer. Maybe it wasn’t going to happen.

Certainly of all the things I had imagined writing about, I never imagined that my writing would focus so directly on my heart condition. Yes, in any memoir it would certainly make an appearance, a recurring guest star perhaps, but I didn’t see it as the starring role.

By ACHA on 8/22/2011 3:50 PM

By Alissa Butterfass

Usually when I think of my heart condition, it’s that—MY condition. Something that is a part of me. Part of my life. My issue. As someone who has been living with a CHD for nearly (cough, cough) years—ok, 40—I feel like I am an authority on the subject in a special way exclusive to only those of us who have been living with a CHD.

By ACHA on 8/8/2011 12:22 PM

By Alissa Butterfass

For those of you considering gestational surrogacy, please know there is no one right way to go about it. Here are just some thoughts I can share based on my own experience (which I blogged about here and here). I am always very open and candid about what I went through, so if you’d like to discuss further, please feel free to contact me through ACHA.

By ACHA on 7/22/2011 8:18 AM

By Alissa Butterfass

I did something yesterday that I almost never do and that I am not entirely comfortable with: I used my heart condition as an excuse.

The weather forecast had called for near 100 degree temperatures, and a heat index of 105. In other words, really really HOT. Usually on Thursdays I work in the city at my company’s corporate headquarters (on Tuesdays and Wednesdays I work from home). But the thought of commuting by rail, subway and foot to my office while carrying my laptop and a change of shoes, among other things, really was unappealing and was, according to “Dr. Mom,” dangerous (note: my mom is not a doctor but claims she has learned enough over the years to be one).

By ACHA on 7/18/2011 8:44 AM

By Alissa Butterfass

For Part 1 of Alissa’s story, click here.

Hubby and I agreed that we’d look into surrogacy first (hey, we figured we had made one cute kid, why not try for another?), and if that wasn’t an option, then adoption. But we didn’t know where to even start our research. I was skeptical to look online as I had no idea what information would be valid, accurate and helpful. We didn’t know how to take the first step. We were saddened that pregnancy wasn’t an option and overwhelmed at the thought of trying to figure out what to do next on our own.

By ACHA on 7/15/2011 9:23 AM

By Alissa Butterfass

As a woman born with Transposition of the Great Vessel, I have many memories of my annual check-up at my cardiologists. And, if memory serves correctly, each check-up ended the same way, with my mother asking the same question: Will Alissa be able to have children? Dr. H repeated the same answer, nearly word for word, each year. “I see no reason why not, but we’ll have to see when the time comes.” At the time, when I was only five or six or seven that question, which was so important to my mother, barely registered with me. My mother never stopped asking the question each year, and Dr. H never wavered from his standard answer.

By ACHA on 6/23/2011 10:22 AM

By Alissa Butterfass

Note: While it is a Thursday, this post was submitted by Alissa on a recent Monday morning.

For my first ACHA blog, Terri had requested I write about my experience with gestational surrogacy—which is how my second son S. was born. As I sat at my computer the past two days, that was my intention. In a separate file I have a couple of paragraphs drafted but I couldn’t focus on them. You see, it’s going to be one of those weeks, and all I can think about is my over-extended so-called life. So, I promise to write about surrogacy in a future post but for now, at 8:52 p.m. on a Sunday evening, I share with you my week ahead.