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It's all in the pump, or my trip to Philly

May 7, 2008 - Cindy Votruba
For those of you who don’t know, I learned I had a congenital heart defect in September 2003 at age 31. I was told that I had complete atrioventricular canal. Breaking it down, I had two holes in my heart, my mitral valve needed repair and my atrioventricular canal also required fixing. On top of that, I had mild pulmonary hypertension. A couple months later, I had open heart surgery.

While I was recovering, I found an online community called Adults With Congenital Heart Disease Association (ACHA). It’s an organization that is a support system of sorts to those with a CHD and their families. The website has all sorts of information on ACHD clinics, resources and a message board. I started posting in January 2004. I don’t post that often, only when I can either relate to a situation or lend a supportive ear (or words in that matter).

Every other year ACHA has a national conference. This year’s conference was in Philadelphia. I got the chance to attend this past weekend. At conferences, CHD patients and their families attend sessions on different topics, such as “CHD and Exercise,” “CHD and the Brain,” and “Handling Depression and Anxiety.” There’s also a big gala dinner and dance on Saturday night. Folks also were able to get a tour of the Old City Friday night.

This past Thursday was the first time I’ve flown in an airplane since 9-11, so I had to make my way through security. My carry-on did have to go through twice in the Sioux Falls airport. I blame the little bottle of contact lens solution (which was two ounces by the way!)

I made it to Philadelphia around 5 p.m. EST. People were already getting to know each other. A couple of young women, both in their early 20s, became fast friends because they have the same condition, HLHS. HLHS is Hypoplastic Left Heart Syndrome where the left side of the heart is underdeveloped. Usually the left ventricle, the left atrium, the mitral valve and the aorta are affected. I was sharing a room with Nikki, a 31-year-old woman from Denver. I found out she’s a big soap opera fan. I can’t remember all the shows she watches, but I know “Passions” is one of them. I hung out with the ACHA board of directors with Nikki Thursday night. We had ordered food from some place outside the Airport Marriott, but it took more than two hours! to get our food.

On Friday night, my friend Cindy (a woman I met at the last ACHA conference I attended in 2004 at Mayo Clinic) decided to go on the Old City tour. The 5:30 p.m. one filled up before we even got to the table to get a ticket. (later that night, the 5:30 tour bus broke down!) We all crammed on a little trolley bus for the jaunt downtown. Cindy and I hung out with Traci (who I know through the message board) and Sarah, Traci’s friend. They were in search of this one sandwich place that apparently served the “second-best” Philly cheesesteak in town. We eventually made our way down South Street (with a little detour to the waterfront). Tons of “interesting” shops as we strolled down the street. The destination was Jim’s Steakhouse, which had photos of some famous and some not-so-famous people with sandwiches. I took a photo of Randall Cunningham’s autograph.

We also ventured down to the points of historic interest, which included the Liberty Bell. The Bell was in a building, so we had to gawk at it through the window. We then went to this place that conducted the tours and had a couple of patriotic shows. Of course, some of the workers were dressed in Revolutionary War era outfits.

Once we got back to the hotel, a few of us headed to the pool. We kinda stretched the limit, staying past the 11 p.m. pool close time (well, we didn’t get back to the hotel until 10:40!). Repeated the same pattern the following night. How to get kicked out of a hotel pool two nights in a row.

One thing that was said by a member of the ACHA board of directors is that people with CHD are the nicest people you can ever meet. Of course he said to me, “I don’t know about you yet, but I’m sure you’re OK.” The last time I was at the ACHA national conference, I’ll admit that I didn’t get much out of it. I was still new to the whole “I have a heart condition” thing, and I couldn’t really relate to most of the session topics. This time, I made more of an effort to get to know a few people, take in what was being said during the sessions and just enjoy myself. And I did have fun.

Until I went through security at the Philadelphia airport.

I had dumped my two bags, jacket, keys and shoes in a tub to run through the security system. My tub got taken aside. Oh great, now what? I had gone on the side where the workers had taken my stuff off the conveyor belt. “Step to the other side, ma’am.” I was hot, sweaty, anxious and just wanted to get going. Finally one of the workers looked through my bags. I had forgotten about a bottle of water in my smaller bag. Sigh.

I could go on and on about my trip to the city of Brotherly Love, but alas, there’s only so much room.


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