I left off with me and nurse Angie sitting on my bed in ICU crying in an embrace. Well, the story doesn't get much more peppy from there on out.
Somehow, the rest of that day I managed to have all to myself. I said I was tired, but really I was just emotionally shutting down. There was a small radio set up next to the wall on the right side of my bed, so I put on the Sarah McLachlan song "Angel" on repeat and laid on my stomach for several hours, crying and trying to come to some sort of mental agreement with myself about how I felt towards my imminent death.
That was an intense day, but I didn't accomplish much. I came out of that Sarah McLachlan experience more emotionally numb than ever before. I remember thinking I needed to be strong for my family, that if I let them know how much everything was bothering me, they would be devastated. They needed to believe I was coping on my own.
Otherwise, I might push them away by asking too much from them and I certainly didn't want that to happen, no matter how unlikely it was.
The hospital stay got worse after that. My health deteriorated. I wasted away to skin and bones, and my normal resting heart rate was 160bpm. My aunt signed me up for make-a-wish and I was accepted, but was too sick to have it fulfilled until after my transplant.
I laid in bed for so long that my muscles atrophied.
One day, nurse Michelle was told to take me on a walk. I remember my little sister being there, and as I walked down the corridor with 10 IV bags hanging from a pole, oxygen in my nose, and two nurses holding my arms upright so I didn't collapse, I felt the first twinge of guilt about my sister. Guilt for stealing the innocence of her childhood with the abrupt loss of mine. From not allowing her any attention because I couldn't help but consume our adult's energy supply completely. I felt like a joy vampire, one who lives off of consuming everyone's love and happiness with my tragedy, so they have none left to give to others.
So then I compensated by being ridiculously accommodating and impossibly positive and happy. Killing my emotions to cover my own fear.
How was I? FINE
Did I need anything? NO
Later that week, nurse Angie came into my room. She basically explained to me that unless I got a transplant soon, very very soon, I would die. She very bluntly asked me if I wanted to die in the hospital or in my home.
I dryly said my home.
The next few days were spent moving me to the step-down unit where I was to stay for a week, then go home...to die.
I was depressed when I got there, and didn't have any interest in seeing anyone anymore. Most of my extended family had left to go back to their respective states, until I went home, when they would return to hold a vigil and be with me when I died.
I stayed like this for a day or so, until I decided to go for a walk down the hall with my nurse. I hadn't been to that unit since the very first night and I wanted to explore the winding hallways and find that scary treatment room. I wanted to see if that place held any puzzle pieces I might be missing to make the whole ordeal fit together in my mind.
What I found was a thousand times better than any puzzle piece.
I asked to walk by the room I was in that first night. Room 15. As we approached I saw a familiar sight. A sign on the door. A passive aggressive note about staying out of the room until after 9:00am. No matter what.
I asked if the girl, Sidney, was still there, and my suspicions were confirmed.
The next day, I felt a little better. I asked to walk around on my own, and was allowed to. I walked past her room, but no luck. The next day I felt even better, I even dressed (for the first time in 5 weeks) in my own clothes instead of the no-butt hospital gown that I'd come to so lovingly refer to as my "prom dress". My green tank top slid off my shoulders and exposed the sharp collar bones above my sternum. My jeans had to be held up by a string because I didn't have a belt, and the wires and leads from the heart monitor were sticking out everywhere. I looked scrappy, to say the least, but I felt something I hadn't in a while...hope.
I went to her room again that day, and this time she was there. Standing in front of the mirror, blow drying her hair and chewing gum. She saw me in the mirror and smiled, then shut off the dryer and turned to me. "Hey, you're that one girl with the crap heart, right?" I nodded, a bit shocked at her bold language. Until then my "condition" had been but a whisper on everyone's lips, something they were trying to hide from me, a rumor that maybe wouldn't be true if only they never said it aloud. The proverbial Voldemort of my life. The disease that shall not be named...
She asked what they did to me, and what was my diagnosis. I explained everything, eventually obviously becoming depressed and saying I was going to die soon, and that I was going home the next week to do just that.
She cocked her head and looked at me with a mix of sympathy and annoyance.
And she uttered the most helpful words anyone had ever before or since said to me.
"We all gotta croak sometime" and with that she turned back to the mirror and started the blow dryer again, never losing eye contact with me.
THAT's all for tonight.
Update on my current hospital situation: nothing has happened because it's the weekend and no one does anything during the weekend in hospitals. I have had really awesome nurses so far this time.
I know there is something wrong with my body. I feel sick. Nausea, headaches, NO appetite, etc. No fevers since I've been here...but then again they've only taken it twice since last night so who can be so sure?
My port feels poopy too. And I have a migraine.
But on the bright side, I had 3 visitors today. No Ryan. But I got a Koren and Grant.
Koren brought me a rose, balloon, sparkly spray, and the physical touching I needed so desperately. She petted my hair and rubbed my feet. Her presence is so calming to me. I really like it. Somehow she makes me feel safe, loved, and cared for just by being around.
Then, BECCA came to see me. She just got back from Brazil on Thursday, and she brought me food that was edible!! And ginger tea, and cake. I love that girl, and I missed her a shit ton while she was gone. <3
Anyway. I'll keep ya'll updated on what's the dealio.
25.6.10
I interrupt my epic story for this announcement.
In the hospital again.
A disaster.
On the phone my doctor sounded worried/concerned. When I got here, the interns downplayed my pain and made me sound stupid.
I pointed out my infected port, the reason I'm here and they respond with "oh, it doesn't look infected"
Wellll...excuuuuuse me.
It hurts.
I have a fever.
It's all red and won't draw blood.
There's SOMETHING wrong with it.
THENNN,
I had to get 70cc's of blood drawn for ridiculous amounts of lab work. More than I've ever seen while conscious. And that's a freaking lot.
The syringe was as thick and long as my forearm. Not exaggerating.
Soooo they thought it was a bright idea to try to get that much blood from my hand vein. Not a good idea, and it blew up right away. Then they suggested something I've never heard of. An IV in my fucking neck.
My jugular vein.
I thought they were joking!!
Then they pulled out a giant needle and it wasn't funny anymore.
The nurse held my hand as the doctor plunged the ginormous needle into my jugular. It hurt so bad I cried. The nurse held my hand. I felt like a kid.
Then, he missed, and had to dig around in my neck for 5 minutes.
"oh, it's not working."
And then he had to hold pressure on the wound so I didn't bleed out. And it felt like I was choking. Like he was choking me.
Then he tried again, in the other side of my neck. That one hurt, but not as bad, and he got it right away. Now everyone has left my room, and I feel lightheaded and tired from not eating all day coupled with having a shit ton of blood pulled directly from my neck.
And I'm mad. Because Ryan said he wanted to take me up here, but didn't want to hurt his back. So he went to a BBQ we had planned to go to together, alone tonight.
And that's fine, I understand. But when I texted him about my neck ordeal, all he wrote was "never heard of that before" and then I asked him to call me and he wrote "not now, still at the BBQ, will call later." and then I said "well I'm really upset and need to talk to you, so please call me soon".
And that was over an hour ago.
I'm sad.
A disaster.
On the phone my doctor sounded worried/concerned. When I got here, the interns downplayed my pain and made me sound stupid.
I pointed out my infected port, the reason I'm here and they respond with "oh, it doesn't look infected"
Wellll...excuuuuuse me.
It hurts.
I have a fever.
It's all red and won't draw blood.
There's SOMETHING wrong with it.
THENNN,
I had to get 70cc's of blood drawn for ridiculous amounts of lab work. More than I've ever seen while conscious. And that's a freaking lot.
The syringe was as thick and long as my forearm. Not exaggerating.
Soooo they thought it was a bright idea to try to get that much blood from my hand vein. Not a good idea, and it blew up right away. Then they suggested something I've never heard of. An IV in my fucking neck.
My jugular vein.
I thought they were joking!!
Then they pulled out a giant needle and it wasn't funny anymore.
The nurse held my hand as the doctor plunged the ginormous needle into my jugular. It hurt so bad I cried. The nurse held my hand. I felt like a kid.
Then, he missed, and had to dig around in my neck for 5 minutes.
"oh, it's not working."
And then he had to hold pressure on the wound so I didn't bleed out. And it felt like I was choking. Like he was choking me.
Then he tried again, in the other side of my neck. That one hurt, but not as bad, and he got it right away. Now everyone has left my room, and I feel lightheaded and tired from not eating all day coupled with having a shit ton of blood pulled directly from my neck.
And I'm mad. Because Ryan said he wanted to take me up here, but didn't want to hurt his back. So he went to a BBQ we had planned to go to together, alone tonight.
And that's fine, I understand. But when I texted him about my neck ordeal, all he wrote was "never heard of that before" and then I asked him to call me and he wrote "not now, still at the BBQ, will call later." and then I said "well I'm really upset and need to talk to you, so please call me soon".
And that was over an hour ago.
I'm sad.
19.6.10
And it goes on and on and on and on.
I've decided to shorten these posts a bit. About my health.
So, you can have controlled bursts instead of acute poisoning.
Where did I leave off?
Oh yes, the first night in ICU.
I arrived at the hospital room (my family must have been there), and got settled into the first hospital bed I'd ever stayed in. It was a pretty nice room. The pediatric ICU had just been remodeled thanks to generous donations from 10 big businesses in town. The businesses each got to put a giant plaque above the sliding glass doors to the 10 intensive care rooms. Mine was Wal Mart. It was decorated in soft blues and whites. Low calming lighting shone from bubble lamps mounted on the wall, and the faint beeping seemed almost therapeutic.
It was 3 in the morning after I got settled in that first night. They started me on Digoxin (http://en.wikipedia.org/wiki/Digoxin) and gave me some medicine for the pain, probably morphine. I slept peacefully for the first time in weeks.
The next few days were pretty average, I got to talk to my 5th grade class on the phone and they were all jealous that I got whatever I wanted with the press of a button. Letters and pictures started pouring in from all over the country, from school, relatives, and random church-goers from all kinds of places, who'd heard about me through the grapevine of prayer lists. I hanged everything on my wall, and soon my room looked like an art gallery.
Word spreads fast.
I was starting to feel, cautiously, stable. The doctors and nurses took a liking to me and I started to feel comfortable instead of scared. I remember two nurses specifically, Michelle, and Angie. They were wonderful.
One day, a doctor brought in a portable computer on wheels, and sat down on my bed to actually tell me what was going on. He showed me pictures of my heart and explained what everything meant. He pressed my fingernails and showed me the difference in blood flow from his. He pointed to my weight loss and blue lips and sunken eyes. I understood, a little more, after that visit.
I was comfortable. It had been a week and I was even in a bit of a routine. Wake up, play Nintendo 64, watch a movie (Waterworld, over and over and over), drink jones soda my mom brought me, talk to lots of people on the phone, sleep, sleep, sleep, medicine. Just stuff.
One night, at 8, I started to feel funny. Doctors and nurses came running in screaming stuff, they were staring at the monitors behind me on the wall. They gave me the torture medicine again, trying to slow my heart, but to no avail. The last thing I remember before I passed out is straining my neck to look above my head at the monitor. My heart rate was climbing, and when I lost consciousness it hit 240 bpm. I had had a heart attack, at 11 years old.
Two days later when I woke up, my mom, my sister, my aunt and her husband, my dad and his new wife (my momma now, Amy) and other people were in the room with me. Amy momma was stroking my leg, and she smiled at me. My parents had to do an emergency conference with my team of doctor's to put urgent priority on my transplant status. At this point they were still trying to get me on the list, but time was running out.
During the conference, my mom had a nervous breakdown and embarrassed herself in front of all my doctors by starting a fight with my dad about the size of his new wife's ring. Wondering why he spent the money on it instead of child support. It was a big huge deal, that I occasionally still hear about to this day .
But whatever happened in that room, I was listed that day, as a status 1a, the worst of the worst and sickest amongst the sick. I didn't ever recuperate from that incident. I was so sick I couldn't get out of bed.
People started talking to me like I was already dead. Everyone cried around me. But I hadn't cried since that first night. I started to wonder if I would ever cry again. My aunt and her husband approached me one day, and the notoriously cold and detached "uncle", who had always yelled at me and was mean to my cousins, broke down and started crying...thanking me for saving his marriage. They realized what was important in life now.
My other aunt approached me after getting off the phone with my grandma in the corner of my room. "She just said she loves me...that's the first time she's ever said that to me, it's a miracle, and it's because of you".
It was all so overwhelming.
I was lucky enough to be alone one day, sitting up in bed, feeling depressed. Nurse Angie was giving me a sponge bath, and I started sobbing. She was startled at first, but regained her composure and asked what was wrong.
"I don't want to die!"
She embraced me and held me while we cried together. It was the first time I'd cried in two weeks, and definitely the first time I'd faced my mortality. I'm glad I wasn't alone that first time. What a good person that woman is.
That's all for today.
So, you can have controlled bursts instead of acute poisoning.
Where did I leave off?
Oh yes, the first night in ICU.
I arrived at the hospital room (my family must have been there), and got settled into the first hospital bed I'd ever stayed in. It was a pretty nice room. The pediatric ICU had just been remodeled thanks to generous donations from 10 big businesses in town. The businesses each got to put a giant plaque above the sliding glass doors to the 10 intensive care rooms. Mine was Wal Mart. It was decorated in soft blues and whites. Low calming lighting shone from bubble lamps mounted on the wall, and the faint beeping seemed almost therapeutic.
It was 3 in the morning after I got settled in that first night. They started me on Digoxin (http://en.wikipedia.org/wiki/Digoxin) and gave me some medicine for the pain, probably morphine. I slept peacefully for the first time in weeks.
The next few days were pretty average, I got to talk to my 5th grade class on the phone and they were all jealous that I got whatever I wanted with the press of a button. Letters and pictures started pouring in from all over the country, from school, relatives, and random church-goers from all kinds of places, who'd heard about me through the grapevine of prayer lists. I hanged everything on my wall, and soon my room looked like an art gallery.
Word spreads fast.
I was starting to feel, cautiously, stable. The doctors and nurses took a liking to me and I started to feel comfortable instead of scared. I remember two nurses specifically, Michelle, and Angie. They were wonderful.
One day, a doctor brought in a portable computer on wheels, and sat down on my bed to actually tell me what was going on. He showed me pictures of my heart and explained what everything meant. He pressed my fingernails and showed me the difference in blood flow from his. He pointed to my weight loss and blue lips and sunken eyes. I understood, a little more, after that visit.
I was comfortable. It had been a week and I was even in a bit of a routine. Wake up, play Nintendo 64, watch a movie (Waterworld, over and over and over), drink jones soda my mom brought me, talk to lots of people on the phone, sleep, sleep, sleep, medicine. Just stuff.
One night, at 8, I started to feel funny. Doctors and nurses came running in screaming stuff, they were staring at the monitors behind me on the wall. They gave me the torture medicine again, trying to slow my heart, but to no avail. The last thing I remember before I passed out is straining my neck to look above my head at the monitor. My heart rate was climbing, and when I lost consciousness it hit 240 bpm. I had had a heart attack, at 11 years old.
Two days later when I woke up, my mom, my sister, my aunt and her husband, my dad and his new wife (my momma now, Amy) and other people were in the room with me. Amy momma was stroking my leg, and she smiled at me. My parents had to do an emergency conference with my team of doctor's to put urgent priority on my transplant status. At this point they were still trying to get me on the list, but time was running out.
During the conference, my mom had a nervous breakdown and embarrassed herself in front of all my doctors by starting a fight with my dad about the size of his new wife's ring. Wondering why he spent the money on it instead of child support. It was a big huge deal, that I occasionally still hear about to this day .
But whatever happened in that room, I was listed that day, as a status 1a, the worst of the worst and sickest amongst the sick. I didn't ever recuperate from that incident. I was so sick I couldn't get out of bed.
People started talking to me like I was already dead. Everyone cried around me. But I hadn't cried since that first night. I started to wonder if I would ever cry again. My aunt and her husband approached me one day, and the notoriously cold and detached "uncle", who had always yelled at me and was mean to my cousins, broke down and started crying...thanking me for saving his marriage. They realized what was important in life now.
My other aunt approached me after getting off the phone with my grandma in the corner of my room. "She just said she loves me...that's the first time she's ever said that to me, it's a miracle, and it's because of you".
It was all so overwhelming.
I was lucky enough to be alone one day, sitting up in bed, feeling depressed. Nurse Angie was giving me a sponge bath, and I started sobbing. She was startled at first, but regained her composure and asked what was wrong.
"I don't want to die!"
She embraced me and held me while we cried together. It was the first time I'd cried in two weeks, and definitely the first time I'd faced my mortality. I'm glad I wasn't alone that first time. What a good person that woman is.
That's all for today.
18.6.10
The life and times of... (very long post).
I'm feeling a bit nuts right now.
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.
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.
14.6.10
In the worst way.
Well...
Called doctor. Took three hours for them to call me back and say they are going to change my medications and see if that works.
What is frustrating about this is that they don't even know what is wrong. They haven't been able to catch this thing on a monitor or EKG, so how the fuck do they know what medicine can work?
I feel like they are throwing this medicine at me instead of being real doctors and figuring out the problem. Oh I am so fucking scared that they don't have my best interest at (no pun) heart. As long as I'm alive, they feel successful, but who the fuck cares about my quality of life, eh?
I told Ryan about it tonight. He just acted like "oh well, you have to do it, so get over it, buck up" and that pissed me off. He said "I'm not going to hold your hand and tell you something just to humor you".
I just wanted him to say "I understand that this sucks for you, I can understand how you might have to cut back on pool if the medicine effects your concentration and comprehension, and I'm sorry you have to deal with that." But no. He said "Not playing pool isn't the end of the world" and then made me feel guilty when I said it kinda was the end of the world by saying "well as long as I had someone worth spending time with, I wouldn't be that bothered by it"...insinuating that I didn't care about him enough to forget about my problems.
That was a tough conversation, because he doesn't understand that I deal with these problems alone usually. I silently accept (and have been for 12 years) what the consequences are of taking my medicine.
I learned the lesson early in my life : If you want to keep people around you, don't complain or talk about death and your health.
So I didn't, for a long time. It took me forever to tell even people I cared about like friends and roommates about my health. Even then I didn't talk about it all the time. I don't talk about it all the time to Ryan, either. But I'm starting to think I just shouldn't talk to him at all about it. Because I know how he'll react, and I know I'll get mad and upset about it.
Sigh.
On a side note, if I don't take this medication, and continue having heart rhythm problems, then they want to implant a permanent defibrillator in my heart, that will shock me every time I have a skipped beat. Which is a whole lot of fucking shocks a day. Arrrgh.
Anooyeeed.
Annnooyed.
Annnnnoooooyyyyannnnceeee.
And fighting sucks. I hate it I hate it I hate it.
and I'm really bad at it too.
10.6.10
Heart...ATTACK.
It is 2:15 AM. This is the second night that I've had bad insomnia, and severe heart palpitations. Tonight the palpitations are worse than last night. They are very frequent and quite alarming.
However...I don't know what to do. I kind of think I should go to the emergency room but I am reluctant. I already know what will happen...they will shove an IV into my arm, pump me full of unnecessary fluids, and take chest xrays and an ekg that doesn't show anything wrong. They will only end up transferring me to St.Louis after conferring with my doctors and I will end up in the hospital for a few days, eventually leaving with no results.
Not to mention, I'm kind of scared that they will try to force the internal defibrillator on me again like I'm a customer buying the best washing machine. So that would mean surgery and a garish looking massive bump coming up from my sternum...which would really add to my beaming self confidence lately.
In the meantime, I will miss a visit from my cousin and a pool tournament/party tomorrow, and maybe even the awesome phone conference about my Hollaback startup on monday night. I will make everyone worry about me, most concerning Ryan because any change in my health makes him treat me like a child pariah.
Then there's the driving thing...I would have to wake up Kelsey and have her drive me to the emergency room where she would either have to stay all night (morning) or I would have to be stranded without a car. Then I would get to be all sad and depressed that Ryan couldn't take me (what with the g/f and all...).
Speaking of which, I'm already a bit pissed that this is happening and I can't call him to see what he thinks, or for him to calm me a bit, or for him to fucking come over here and hold me while my heart skips fucking beats.
I'm worried about it because right now its happening in a higher frequency than it has in a long time. I am also worried because I have had sudden death before, luckily in the hospital. It's a side effect of the IV medicine I'm on, but so are palpitations.
Fuck. I'll just go to bed.
Hopefully I'm still alive when I wake up. And if I start having them again tomorrow night, I promise I'll go to the ER. There's a compromise for you.
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