As a child, I thought that being short of breath after running around with my sistores (an affectionate term my sisters and I call each other) was normal. I thought being exhausted and always needing naps was just part of my day. I thought having blue lips and fingernails made me different. I thought sometimes feeling dizzy once in awhile wasn't a terrible thing. I also thought all of these things were just a part of living with a heart that was special, because it had two holes. I thought this was normal. I thought this was MY normal. Little did I know there were other people out there who were experiencing much of the same thing.
When I was nine months old, after several months of trying to figure out if there was something wrong with me, my parents were told that I had a congenital heart defect known as atrioventricular canal (AV Canal) and pulmonary hypertension. They were also told I might not make it to my first birthday, or I might not make it past the age of 50. What they were told, basically, was to take me home and love me the best they could. And so that is exactly what they did.
I only really understood the fact that my heart had a problem, that it had two holes in it, and they were never fixed. I knew that my heart kept me from playing in gym class and participating in sports. I did run around the neighborhood as a child, but always had to rest for long periods of time afterward. I knew my heart was the reason. And while sometimes it was frustrating to deal with, it was something I became accustomed to, and eventually it just felt like MY normal.
While there were many things I was not able to do, I never felt totally left out. My mom found things that I could possibly try. I did try dance lessons, but that only lasted a class or two before she realized it wasn't something I could handle. But I took organ lessons and art classes. I spent years in chorus in grade school. I was a Girl Scout for several years. I was part of the yearbook in high school, and I even became part of the girls' softball team as a scorekeeper. The one activity I remember the most, though, was volunteering in the 1st grade class when my classmates went to gym while in middle school. It was then that I knew I wanted to become a teacher, a goal that never left me even in high school when many teens don't even know what they want to be after graduation.
Going to college was a challenge for me. Not academically, mind you. I did pretty well with my courses, and made the Dean's List many times. What was hard for me was navigating around the beautiful campus, walking from building to building in sometimes very cold weather and high winds. I will never forget getting into a building and going immediately into the bathroom to hide in a stall in order for me to catch my breath. Sometimes it took several minutes before I could continue to the classroom. I remember feeling like my head might explode, and my ears would ring so badly from the exhaustion that I almost couldn't hear. Finally, when my heart started to regulate and I could breathe better, I felt so tired. There were many times I felt like falling asleep in class, not because it was boring, but because just getting to the class was so tiring! I still drive through the campus all the time today, and wonder how I ever survived four years there!
After graduation, I began my teaching career. I went from subbing to teaching at a daycare to teaching preschool for Headstart within a few months after getting my degree. I only lasted a few years (not even) with teaching. Many factors were against me in the environment I was working in: the building had many staircases, and my classroom was on the second floor and I had to climb the stairs from the basement to the 2nd floor at least 5 times a day, and the preschool age children were pretty tiring after spending a day with them! The biggest hurdle was trying to combat the germs. Let's face it, little kids are germ factories! No matter how many times they are told to keep sneezes to themselves, to wash their hands, etc, it didn't matter. By my third year of teaching and my third major respiratory illness, I was told to quit my job. I was 24. It never occurred to me to end my career at that age. I felt defeated. I was upset that my heart and my health could not keep up with something I wanted to do since I was a youngster myself.
Even after leaving Headstart, my health didn't quite get better. I started to feel more chest pressure, like something was sitting on me and I couldn't get rid of it. I was even more short of breath than ever, and more tired than before. I went to my pediatric cardiologist, the one I'd been seeing forever, and he put me on asthma meds that never helped. I eventually talked to my primary doctor about my symptoms, and she referred me to the Cleveland Clinic in Ohio for a transplant evaluation. I was petrified of going. I couldn't believe it was coming down to this. My mom had mentioned every once in awhile what would I do if I were told I'd need a new heart. I think most of the time I was too young and naive to understand that it could become a real option. Now I was facing it, and very scared of that possibility!
Appointment time came, and I did all sorts of tests: xrays, pulmonary function tests, 6 minute walk, arterial blood gas, CT scan, echo. It was a long couple of days, that's for sure! I saw a pediatric cardiologist despite being 25, and a pulmonologist. Oxygen was discussed, something I had already been using at night only, and I was told to start using it all the time. That was devastating. I cried all the way home after that. Transplantation was not on the table yet, but I was to go back to Cleveland in another three months to repeat many of the same tests. After going back a few times, I heard pulmonary hypertension being discussed more and more. I knew I had that, but I sure didn't understand what it meant. I always thought my heart was the huge issue when it came to my health. Honestly, it wasn't until my first shipment of PH medications and a flyer from the PH Association with their website that I first began to learn more about PH and exactly what it entailed.
I spent a week reading the PH message boards and crying. I had found a community of people living with MY normal. Except, it really wasn't a normal way to live. I learned that it wasn't really normal to gasp for breath after trying to exercise. I found out it wasn't normal to be exhausted after making the bed. It wasn't normal to have purple nails or lips. I discovered that what I thought was normal for me my entire life was truly not the way it was supposed to be! What I discovered were what I would eventually call as phriends. People who had PH for one reason or another, and who had the many of the same symptoms and feelings as I had growing up.
As if finding this rare community of people wasn't enough, in the next several years I also discovered that the reason for my PH, my congenital heart defect, was also a part of another community: adults with congenital heart disease. And, breaking down my condition even further, I have what is known as
Eisenmenger's Syndrome (ES). I eventually learned this along the way the more I was going to Cleveland Clinic. It's an even tinier group than PH, and I only know a very small group of people who are living with ES, as well as pretty limited information about the condition. Regardless, it was amazing to find anyone who could relate to how I'd felt my entire life!
In the last almost 14 years since I had to quit my teaching job, my health has been much better. Yes, I still have some bad days where I can't seem to do much of anything besides waking up, but they are few and far between. Yes, I still get short of breath, but my recovery time from the things that make me exhausted is much less than it was when I was a child. While I'm not running marathons, I am able to exercise several times a week, a far cry from when I was young and not allowed to do much of anything physical! And while I miss being a teacher, I have come to realize that my "classroom" is not at all what I was expecting. I have been able to educate so many people about PH, and even about congenital heart disease. I've told countless strangers about both diseases when they've approached me about my need for oxygen. I've been running a PH support group in my area for about eight years, helping many people just learning about their diagnosis or finally finding people they could relate with. My online involvement with PHers seems to keep growing, from running two chat sessions a week to being a PHA mentor to friending PHers around the world on Facebook and sharing experiences. I've found my new calling in life, apparently, with the PH community.
After living with PH and congenital for 38 years (so far!), I have found a new normal. I've found MY new normal. I am so thankful that I no longer feel so alone with my condition, and I hope to continue helping other PHers navigate THEIR new normal for years to come.
~Colleen S.
