Sometimes, for reasons unknown to me, I lose my train of thought. Not on just nothing staring into space. I actually go to a different place in my mind, a different time. Involved memories that make me re-live or re-witness something I had forgotten. Sometimes it's dreams from years ago that I'm suddenly thrust into while I'm reading a book. Sometimes it's a fight I had with a school mate in third grade that made me feel really bad. Today, it was the beginning of all my heart troubles that crept up on me while I sat playing a game on facebook. For about 10 minutes I blankly stared at the computer screen as I felt the same fear and frustration I did those 11 years ago.
I've never written the whole experience down before. Oh, I've tried many times, but the truth is it's incredibly tedious, involved and maybe a bit tragic for my taste. Anyway, my 12 year heartiversary is on the 30th of this month (holy shit!), so for those reasons and more, I'm going to account the whole thing here. Yay for you! And me, because this post traumatic shit sucks.
Where to begin? Well, perhaps you need a bit of a background. Where our story begins is in a small town, Central City, IA. Population is supposedly 1000+ but that's debatable. My family (which at the time consisted of my single mother, me, and my sister 3 years my junior) had just moved there from Lincoln, NE because my mom got a job offer working for an environmental company of some sort.
The year was 1999 and we lived in a trailer in the front yard of our soon-to-be home that was an old pole barn still being renovated. It was ginormous, and beautiful.
That fall I started 5th grade at my new school. I excelled and made many friends.
Looking back on everything through pictures, my family and I both see many signs that could have pointed to my illness. It's obvious that I was losing weight over the winter. I had always been a bit of a chunky kid, so when I started losing weight it was only looked at as fortunate. Growing into my new body.
When school started again after winter vacation, I actually felt fine. I was doing well in school.
In march, my weight loss became drastic. I remember standing on the scale in front of a friend from school, comparing. I weighed 90 lbs, at 11 years old. She called me a bitch because she was jealous.
I had been looking forward to April for months, we all had. It was roller skating month in P.E. where we set up the gym like a rink and skated with disco lights and cool music.
I remember the day like it was earlier this afternoon. The song was "kiss me" by sixpence none the richer. I was skating when this strange feeling started welling up in my diaphragm. I had no idea what it was. I thought it was painful, but couldn't be sure. It felt like someone was sitting on me. Crushing the breath out of me. "Kiss me, beneath the milky twilight" sang in the background as I collapsed on one on the giant wrestling mats lining the gym. It took me the rest of class to catch my breath and as soon as I stood up to walk back to homeroom, I was out of breath again, this time in pain.
I walked straight to the nurses station, but they just chalked it up to the rollerskating, saying I must have pulled a muscle. And I had no reason not to believe them.
The next few days it became increasingly hard to walk, even through the hallways to my classes. I wasn't eating at all, and was getting sick when I did eat.
At home, I kept up appearances, just assuming it would go away. When I went to bed, I had to sleep almost sitting up to keep the pain bearable.
One night, it was very late, and I still hadn't fallen asleep. I was laying in the dark, forcing the breath out of my lungs to test the strange wheezing sound they were emitting. What was causing it? When suddenly I needed to throw up.
I hate throwing up, and while screaming running to the bathroom, I woke up my mom. She came downstairs and held a washcloth to my head while I puked for half an hour straight. I was exhausted afterward, and she knocked me out with some NyQuil so I finally got some rest.
The next day I called her to my room to have her listen to my weird throat noises. She pressed her head to my chest and heard them too. I told her I just didn't feel well and that I'd like to go to the doctor.
Her next words will haunt her forever, because she feels guilty for saying them, and wonders if she should have done something different.
"It's probably just heartburn, you don't need to go to the doctor" But I insisted, and she complied, with an appointment a few days later.
THE FIRST APPOINTMENT
I didn't really care about doctors, ever. They didn't bother me, and I didn't care about them. That day was the first time I ever saw concern from a doctor. Usually they were so quick to reassure me or my mother that nothing was wrong. This time he looked scared, even.
Understand that the doctor's office in Central City was literally a 2 room facility. There were two examining rooms, and ancient equipment. The paintings on the wood paneling were of embroidered orange clowns. A very eerie memory.
He took me into a back room that, to my recollection, was just a table surrounded by antique ekg machines. Seriously, they (or IT, rather) took up the entire length of the wall and looked like one of those computers from the 50's.
He ran almost 2 hours of tests. The paper came out of the wall, feeding him information as he nodded and "mmmhmm"-ed. Then he said he couldn't help us and that we had to go to the university hospital an hour away in Iowa City as soon as possible. He would call them and let them know to expect me.
We (my mom, sister and me) went home, got ready, and left sometime in the evening. On the way to the hospital, we stopped at dairy queen and I got a blizzard, yum. Mint chocolate chip, if that tells you anything about the inherent lack of urgency.
We arrived at the hospital in what may well be the nick of time. As we walked the corridors, trying to find registration, I had to stop several times to catch my breath and deal with the pain.
When we reached registration, they didn't have us sign any papers or wait for an escort, sending us straight to the children's hospital side of the university hospital. A small detail I now realize to be amazing. It was imperative that I see the doctor's as soon as possible.
The walk to the second floor children's hospital was excruciating. I cried and puked and stopped every 10 feet. Yet I still thought they were going to tell me it was nothing, they were going to laugh and apologize for wasting our time.
I remember the room, room 15. We were showed in by a nurse and left to wait for doctor's to come. It was 8:00pm, and the person inhabiting the other side wasn't there. As I waited, I looked at her picture from my bed. I looked at her machines and notes. I marveled at the hospital room, never having been in one before. I laughed at the passive aggressive note she left on the door, telling everyone to leave her alone unless it was past 9 in the morning.
Then the doctor's came in next. They asked me what the pain felt like. I told them it felt like a terrible internal bruise, that someone was pressing on constantly. Also, that I felt like a giant person was standing on my chest. Compressing my breaths.
They explained they had no idea what was going on, but they would do tests to find out that night. Another notable miracle of sorts, usually you can't get tests done that late, the technicians mostly go home at night. But the actual doctor's were going to do the tests.
They wheeled in the hugest wheelchair ever. My sister whined that I was lucky that I got to ride in it, and I managed to smirk because I did feel quite doted upon. Every doctor in the place was paying attention to me, I didn't know it was a bad thing. I climbed into the monstrosity and sat sideways with my knees against one arm, and my back against the other. My family could only follow me to the door of the test, but had to wait in the room during it.
Inside the room, I laid bare chested on a hospital stretcher. The room was dimly lit and there were 5 or 6 doctors in there, leaning towards the ultrasound machine. My first Echocardiogram. There was some kind of delay, since the technicians were gone, they couldn't figure out how to get it unfrozen. I looked at the screen and after 15 minutes of debating whether to say anything, I pointed out that they forgot to enter my last name, and voila! It was the magic trick. I was applauded, and laughs were had at the irony of an 11 year old telling doctor's how stuff worked.
That was the only test they did. They sent me back to the room, where I detailed the story to my family. The lady in the next bed was there now. Sidney. I could tell she was used to hospitals, she was comfortable and the nurses all knew her and acted like she was family. I'll never forget that girl. Never. Later in my story she will reappear.
The doctor's piled in shortly after I was back in the room. They closed the curtain around us, and sat down next to me in chairs and even at the foot of the bed. "There's no easy way to say this, so we'll just say it. You have Heart Failure, Idiopathic Dilated Cardiomyopathy, you'll die without treatment, and probably without a transplant."
My mom started crying, which made me cry. I was really hoping it was nothing. Now it was everything.
They refused to give any kind of prognosis, and said I would be staying here for a while, if my family needed to regroup at home. They left a box of tissues and walked out.
We cried, and Sidney pulled back the curtain to say she heard everything and was really sorry it was happening.
The reprieve wasn't to last long. Next began the nightmare that continues to this day, to this moment.
I remember what was happening to me that night, but after the dreadful news, and the crying, I can't say what the hell happened to my family. Did they stay, did they leave? I don't remember.
I was taken to a room. This room, this exact room and it doesn't look any different than that night only there was no giant chicken:
On the outside it said "treatment room" and was informed they were going to try to do one thing before I was sent to intensive care. Just to see if a special medicine slowed my heart down. There was a small chance it could do some damage control.
The next half hour was some of the most painful, torturous moments of my life. It was my first IV, to begin with. It hurt and blood was everywhere. I was scared, and my family wasn't allowed in. I didn't know the doctors, but they were being kind. They held my hand and told me to try to relax.
This is actually really scary for me to write right now. I feel panicked, and I feel phantom pain and extremely anxious. I remember what the medicine felt like.
"Try to stay calm, you may feel some tightness, but you'll be okay, we're right here". It was this drug: http://www.drugs.com/pro/adenosine.html
And I got every side effect possible. It slows the heart immediately after injection, and when your heart goes directly from 160 beats a minute to 40 beats a minute, it's fucking painful. I screamed, and couldn't breath, my screams became muffled and sounded like extended grunts. My back arched and my muscles tensed, the doctors held my shoulders and feet down. I was allowed to rest in between dosages. I cried and asked them to stop, but they kept doing it. I was so exhausted. Finally they said "last one, and then you can go up to ICU". It was over, but I was scared for life from that experience in that fucking room.
The rest, dears, is for later.
No comments:
Post a Comment