Last year I went to the Adult Congenital Heart Association Conference in Chicago with my zipper sister, Tracey. We both have tricuspid atresia, have had the Fontan procedure, and live in the same area. If that wasn’t enough of a bond, we also work together at a nationally-ranked pediatric hospital in the Cardiac Intensive Care Unit (CICU).
I only have one more appointment with my ACHD cardiologist until she retires in July. My current cardiologist, we’ll call her Dr. L, is only my second cardiologist—ever. And my first ACHD cardiologist. I have been seeing her since I was about 19 years old. She is not only an amazing doctor—how many docs give you their cell phone number?—but she is a pretty cool person, too.
But while I am one of her biggest fans now, we have not always seen eye to eye.
In December, my phone died. It super died. It got stuck on a loading screen doing an update and it was over. I couldn’t get any pictures or contacts off my phone. And at first I thought, “Awesome, now I will get a new great phone.” And then reality set in.
I went to the phone store, bought a new phone, and went home to plug in a bunch of phone numbers. I got my husband, my mom and my sister… and then several four-letter words came out. I realized that now I don’t have a phone number to contact my cardiologist or adult congenital heart team if I need to.
In September I was able to attend the ACHA 7th National Conference. I got lucky that my work wife and fellow Fontan, Tracey, was able to attend as well. There were three different “tracks” at the conference. One track was geared more towards patients, while the other two were more for professionals: nurses, doctors, surgeons, medical students… you get the idea. So what were two pediatric cardiac ICU nurses/single ventricle patients to do? We were struck with a very important question: patient or professional?
Last month my husband and I went to Paris as a last hoorah before we would see how the rest of my cardiac year played out. The day we were flying out I was feeling particularly icky with nausea and being exhausted and I was glad to have a few travel “tricks” up my sleeve. So I decided to share a few of them I’ve found to be successful to hopefully ease your end-of-the-summer travels!
Up until this point in my life, whenever I would go to my twice-a-year cardiology appointments, I would do and hear roughly the same thing. I would get my vitals, EKG, and echo done and then my doc would come in and chat with me and tell me things look “about the same” and that I should continue with my meds—and I would keep on trucking along. That was my average heart year.
Unfortunately, this isn’t my average heart year. I would say that I am having the worst heart year ever. In my last blog post I explained that I was admitted for the first time in more than 20 years. Well so far this year I have been admitted three times, have worn no fewer than five Holter monitors, plus a BP monitor, and have had my first cardiac ablation.
I was hospitalized for the first time in 20 years last month. It was a pretty scary situation but when I look back, I am thankful for many things. I always think that things are what you make them. Here is why I am thankful for this little “hiccup” in my health:
I am thankful that I was at work—a children’s hospital’s cardiac ICU—when my heart started to act up. I sat down to do some charting on my patient and I felt like someone dropped a blow torch on my chest and that I was going to vomit. When the pain let up a little I noted that my heart was racing.
As adult congenital heart patients we often learn early to “listen to our bodies.” Not listening can have dire consequences. We learn when our bodies are giving us the yellow light to slow down and take things easy. For me it’s more of the red light – stop, something is wrong – that I have a hard time with. What can I say? I am a bit hard-headed!
Some of us ACHDers have to take prophylactic or preventive antibiotics before routine procedures like teeth cleaning. I am one of those people whose cardiologist suggests that I take antibiotics before teeth cleaning and getting piercings. My doctor recommends taking antibiotics preventively to protect against a serious heart infection called bacterial endocarditis.
It's always nice to have work buddy—someone who has your back during a bad day, who understands your stressors, and shares in your accomplishments. You can also talk to your work buddy about life outside of the office, or in my case, my unit. The right work buddy can be more like a work wife or hubby.
The large majority of nurses are female. And I am lucky to have a cool work wife. I hate to brag but my work wife—Tracy—is super special! Not only do we share a bond at work, but we also share a heart bond. She is an ACHD warrior, too.
Late last year I shared with the ACHA community that I had gotten my dream job! I am working in the cardiac intensive care unit at a major medical center. This hospital also happens to be where I had all four of my surgeries (many years ago) and it is still the hospital I go to for my cardiac care now.
This job has challenged me in so many ways that I never thought possible. I get to work with some of the most astute medical minds in the world. They are a truly amazing group of people that have such a wealth of knowledge that I am dying to learn. Whenever I find time to pick the brain of a more senior nurse, I do! I ask about all kinds of cardiac conditions and blood flow patterns and medication dosages.
In March my husband and I went to Walt Disney World in Orlando. We went to celebrate our one-year wedding anniversary. We got a hoppper pass to see all four Disney parks and ran around like a couple of kids (figuratively speaking) and had an absolute blast.
Making our way around the four theme parks—combined with the Florida heat and standing in the Disney lines with that heat—made me pretty exhausted. Day two of our vacation was when the excitement worse off and the fatigue set in, and I realized that I couldn't keep up with the kids in the park or my husband and I started to feel a bit down.
Many people at some point in their life forget something. It might be something as simple as lunch at home, a deadline for a project, or an item at the grocery store. But as an adult congenital heart patient, forgetting to take medication can have pretty serious consequences.
I have been working the day shift (7 a.m. – 7 p.m.) at work for the last six weeks, which is the longest I have worked days in years. It really threw my body, memory and schedule for a loop! I think that there was about a week where I just forgot to take my meds. Oops!
Working in the healthcare field, you would think that my job would provide excellent healthcare benefits. Wrong. Even with the “high option” my insurance is mediocre at best and once you add up all the co-pays you really are not saving as much as some of the insurance companies want you to think.
Lucky for me, last year when I married my hubby I got some pretty cool in-laws and some amazing health insurance. Insurance that was so wonderful that it even has a clause in it about congenital heart disease. Pretty cool, huh? I thought it was wonderful.
Back in June I shared with the ACHA community that I had spent time interviewing on the cardiac intensive care unit (CICU) at the very hospital that I grew up in. I decided that I needed a change from the ER and wanted to learn more. I felt like I would fit in just right. The CICU is a place so close to my heart and after my interview I wished and hoped and prayed that I got the job. Six long weeks later I got the call. I got the job!
Sometimes it seems like all I am is one big diagnosis. Just one big ‘ol walking pharmacy in my purse—a cruel game that went wrong on one of God’s board game Friday nights. And then, God gives me a little bit of perspective. I am humbled and thankful. But for you to fully understand what I am talking about we will have to rewind and go back about two weeks.
Many times in my life I have been faced with things I cannot or should not do. I am faced with what people think I can, cannot and should not do. I have come to realize that people who know about my CHD expect me to be a bit more slow, more tired and a little less “able.” And I will admit that sometimes I expect the exact same. I am a bit more slow, I am a bit more tired and sometimes I am a little less able. Because let’s face it, us CHDers—we’ve got problems.
But I recently stumbled upon this quote: “Happiness is not the absence of problems but the ability to deal with them.” I have come to realize that attitude is everything. I am my biggest barrier. Not my CHD. If I put my mind—and broken heart—into something I can usually achieve my goals. Sometimes I have to modify the way I get to my goals, but eventually I get there. And reaching my goals is much sweeter because I do have the ability to deal with those problems.
On March 1 I attended Lobby Day hosted by ACHA and Mended Little Hearts in Washington, D.C. It was an amazing experience. This was my first Lobby Day and I was not sure what to expect. To be honest, I was a little hesitant to go because it was super early in the morning—7 a.m. in D.C. traffic is awful—and I am a terrible public speaker.
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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.