A few years ago, a phriend wanted to do something for PH awareness month, but being that she could not physically go out and about and spread the word, she came to me with an idea to blog about PH. I thought it was a wonderful idea! So in my post today, I decided to share how I've felt growing up with this disease, before being treated, and even after.
I have said before that I was born with pulmonary hypertension and congenital heart disease. Neither were discovered and diagnosed until I was 9 months old. The doctors couldn't repair the 2 holes in my heart because it was too late to do so, so they told my parents I might not live until 1, or I might live 50. In 15 more years, I WILL hit that 50 year mark, and I hope to do so while still in pretty good shape.
Obviously, I remember nothing as a baby with PH. I only know my mom told me that I was a pretty good baby. I didn't cry much, probably because crying made me way too tired. I didn't gain pounds, I gained ounces. Breastfeeding was too exhausting for me. I slept alot. But, I survived all that and moved on into childhood.
I remember bits and pieces from being a small kid. I do remember going to gym class in school for the only time in my life when I was in Kindergarten. Although my mom had told the teacher that I was not allowed to participate in gym, the teacher had me walk down the street to another school's gym with my class, and then I had to sit on the stage watching my classmates play. Thankfully, that was only once, because when my mom found out, she was not happy. I never went to gym class again. What I did in the meantime, I don't remember until I was in middle school. That's when I would go down to the first grade classroom and help the teacher until I had to go back to my own class. It was then that I knew I wanted to teach.
I remember in 4th grade, during lunch, I would be allowed to pick a friend to stay with me in the classroom to eat since it was too hard for me to go down the stairs into the basement and back up. This only happened in 4th grade, and I'm not sure why. I had to huff and puff up and down those stairs, which seemed like a million every time, when I was in the older grades. My heart would always feel like it was going to explode on the way up the stairs. When the class had to stop going up because someone was getting yelled at, I was thankful for the small rest and the small chance I had to catch my breath so I could continue.
When we started computer classes, they were down in the basement. I remember after class, I'd get a "ride" back up to the classroom from my computer teacher. He would carry me on his back until we got to the door. I always appreciated that. I imagine I didn't weight that much to him, since I probably was the size of a stick. lol But still, those stairs...let's just say that they were not my friends.
Field trips. Wow, field trips weren't always fun for me. Sure, the bus trip there was fine since we were sitting. But when we got to our destination, sometimes the walking was just too much for me. I couldn't keep up with everyone. I felt so conscious about it, and I'd try so hard to stay with the group. Many times I was thankful for any breaks we had. I know for sure that field trips were sometimes very hard to deal with.
In my neighborhood, there were alot of kids when I was growing up. We often played together, and I tried my best to keep up as much as I could. Playing tag and hide and seek were often hard because of the running around, but I did it. I tried playing baseball, but that just didn't work. So many times I felt like an idiot for not being able to keep up with anyone. But the times when we played sit down games, or played with Barbies or whatever, those made me happy since we didn't have to MOVE anywhere. And we used to do things like make tents on the front porch with blankets and spend most of the day under there with games, and I remember being happy then!
I opted to go to the Catholic high school after graduating from 8th grade for 2 reasons. The first being that most of my friends from grade school were going there, and the second being that the public high school was just so huge and intimidating. You wanna talk about stairs?? There were 4 floors and I can't imagine trying to get to a class in 4 minutes. They had elevators, but are they always guaranteed to work? No way. So off to the Catholic high school I went. Even though the stairs weren't as many as what I had to deal with in the grade school building, it was walking the hallways that got to me. The times when I had to try to get from one end of the building to the other in 4 minutes were sometimes unbearable. And I always was the type who hated to be late for things. So I huffed and puffed my way through high school, and when I graduated, it was time for college!
College, a completely different change to my life, not only mentally but physically. Not only did I have to walk far to get to some classes, but I had to leave buildings to get to another one, and the elements weren't always on my side. Winter in Western NY isn't pleasant, and often brutally cold and windy. And being that the college was close to the gorge, the winds there were downright awful sometimes. It's a miracle that I was never lifted up into the air and carried off to Canada. Fighting those winds was horrendous on my lungs and my heart. When I would finally enter the building for a class, I would have to hide in the bathroom just so I could catch my breath for 5 minutes before I could get to my classroom. THANK GOD there was an elevator. I usually only had to go to the 2nd floor, but just trying to climb stairs after feeling like my heart would explode was frightening. I am thankful that many of the buildings where I had classes had elevators. It did help some, but many times, I was very tired getting to class. And when I was extremely tired, I had a hard time focusing on the lecture because I had lost so much oxygen I felt groggy. But despite it all, after 4 long years, I got my education degree and I could begin my teaching career!
I only subbed for a couple of months before getting a job at a daycare as a preschool teacher. While I loved being around the kids, it was exhausting and taxing on my body. I also got sick more often than I had ever been when I was younger, and that was alot. I definitely had to go back home after work and take a nap just so I could continue through the day, even though naps were not that uncommon to me. It just seemed like I needed them more.
Two months after working at the daycare, I was hired as a classroom teacher for Headstart, which is federal program for preschool-age children. I was so thrilled because I had my OWN classroom! Not only that, but the school where I was to work was only one block over from my house! Yay! Ironically, the building was the same one I had walked down to in Kindergarten to sit and watch my classmates take gym class all those many years before. Considering I had only been in that building once before (and I was 5), I did not realize that they had many staircases. And my classroom was on the 2nd floor. And there were no elevators. And I had to take the class down into the basement for breakfast. And lunch. Which meant, I was doing stairs minimally 3 times a day, but more than often it was many more times than that. But, I took them slowly most of the time, and stopped my class on the stairs often on the way back up, mainly to catch my breath. The first year of teaching went pretty well, although I'd go home pretty tired most of the time. My second year of teaching went ok, but I felt as though sometimes I wasn't performing my duties as a teacher as well as I would've liked since I was tired much of the time. I skipped out on some lessons I'd done the year before, and I didn't have much energy for things. But I still loved my job and tried the best I could!
My third year as a preschool teacher fell apart slowly. The school year started out ok, but I had several students who were a handful. One of them tried to choke me as I sat on the floor playing one day, and I had to put him into a basket hold and had my aide call the principal up. I can't put into words how tiring that episode made me feel, and I had such a hard time focusing the rest of the day because the sheer exhaustion left me in a daze. I remember another time when this same student ran away from me while we were outside waiting for the bus, and trying to catch up to him and bring him back made me almost pass out. I'm actually surprised I didn't. After he finally got on the bus and I went back into the building, I remember being near one of the railings to the staircase, and somehow I crashed my forehead on it and started bleeding. I think it happened because I was in such a daze after running after the child outside (where it was also cold). I also think I scared the crap out of the nurse because I looked so horrible when I went to her for a bandaid.
I spent my third year of teaching pretty sick, and not with just a cold. I had double pneumonia, then bronchitis, and it was when I was on my third respiratory illness that my doctor told me to quit my job. It was heartbreaking for both of us. She knew how much I loved teaching, and I knew how much I would miss being a teacher. But had she not told me to quit, I may not be here today, for I would've never thought at the age of 24 to retire.
During all this time as a teacher, I was also enjoying a social life filled with going out to dinner with friends often, but also going out to party. Most weekends, I was at a bar with my now ex-best friend. We did so many things together, usually. Shopping, bar hopping, hanging out, whatever, we had fun. But I remember one day in particular, I thought I was seriously going to need medical help. We went to the Peach Festival one September, and this particular year they had it at a different location that required us to walk up a pretty major hill. Honestly, I'm not sure how or why I made it up there. By the time we finally got to the top, I had to sit down immediately. I thought I was going to throw up. My heart felt like it wanted to pop out of my chest and run away, and my legs felt like they were on fire. My ex-friend left to find some water for me. I had to sit quite a long time before I felt like I could get up and we could walk around. But I felt like hell, and it put a damper on the day. By the way, I did walk down the hill. Down is waaaaaay better for me than up.
I had also gone back to college for my masters degree during my third year of teaching, and it was hard not knowing if I should continue once I had to quit my job. I was getting my masters in early childhood education, since I realized how much I wanted to continue working with small children. I opted to finish my degree, and although I can't use it in the way I want, I am glad that I got it. I was thankful that although I went to a college with a huge campus, I had classes in only a few buildings, and I only took 2 classes at a time. I was able to park in an area meant for handicapped parking, and it wasn't as horrible a time getting into the buildings, although I still did get rather tired.
The last couple of years before I was finally able to get treatment for my PH symptoms were very rough. I realized how much as a kid I was able to deal with the shortness of breath and fatigue alot better than as an adult. I think maybe it's because I grew up feeling like it was normal for me to be so tired. The older I got, the more aware I was that this just wasn't right, that something was really wrong, although I still felt it was MY normal. I didn't know anything else. There was one night that really made me realize how bad everything was, although I can't go into details about it. After that was when the elephant moved in, right onto my chest. I never had that elephant in all the years I dealt with PH. It was something new. I actually thought maybe it was asthma, and I was even given inhalers that didn't do diddly squat. Eventually I was referred to the Cleveland Clinic Foundation for transplant evaluation.
I found out before going to CCF that I would need to be able to do a 6 minute walk. I thought, what?? I wasn't sure I could even do that! So, I began using my sister's treadmill in the basement. I thought I was going to die. It was so hard to do, and the shortness of breath was awful. My legs felt like jelly every time I finished walking. I tried to go on the treadmill every day, or every other day at least. I was determined to be able to do that test! I eventually got up to 6 minutes on the treadmill, but it was agony. When the time came to go to CCF and do the test, I'll never forget how I felt. I kept telling myself to keep going, to ignore my heart racing so fast, to pretend my legs weren't roaring with pain, to try not to give in to the feeling of puking my guts out everywhere. They were the worst 6 minutes of my life, even though I've had to do that test every time since I've gone there, and I will have to do it every time I go back.
My first appt at CCF required many other tests, and led to 2 prescriptions for the time being: Coumadin, a blood thinner taken every day and requiring lots of bloodwork, and oxygen to be worn all the time. While I was so reluctant about the oxygen, eventually wearing it constantly made that elephant disappear. Several more visits later, I was prescribed Tracleer. Most of the meds need special authorization from insurance, and it can take several weeks before the patient gets the drug. While waiting to see if I was going to even get Tracleer, my parents and I had gone on a trip to visit my uncle and his family in Michigan. My PH symptoms were still very bad at that time, and I felt so depressed on that trip. I remember spending most of the time in the room I slept in, writing and listening to music. I wondered if I would ever feel ok, I wondered what my future held. Would this new pill even help me? Would I need a transplant soon? It was a very scary time for me.
Tracleer arrived in October, and on the 12th of that month in 2003, I took my first pill. I didn't notice anything for weeks, and still wondered if it was going to work at all. One day, when I went to vote during an election, and I walked back to the parking lot to get into my car, I realized that I wasn't very short of breath as usual. I broke out into tears. I went home, and realized I wasn't gasping for breath the minute I got into the door from my garage to the house. I cried even more. The changes in symptoms were subtle at first, and eventually they kept improving. I couldn't believe that life the way I had known it all those years - the constant fatigue, the shortness of breath, the limits on what I could do - was really not existing anymore. And it was WONDERFUL!! Tracleer worked well for me for quite awhile, and I could even exercise! I even danced at my sister's wedding 8 months after starting it! Eventually, though, I could tell it wasn't working quite as well as in the beginning, and I added Revatio on August 16th, 2007. The combination of Tracleer and Revatio have really worked for me. For a little over 2 years now, I've been able to go to pulmonary rehab twice a week, and I really believe that's helped to keep me pretty stable. My PH symptoms are still around, but they are not constant. I don't always get short of breath walking places, and I am able to do a bit more than I used to before meds. I am so thankful for all the meds out there to treat PH. I hope to not need another one for a long time, but if it comes down to it, I'll do what I can to keep fighting this disease!