Bill Coon has recently published his story of going into Heart and Kidney Failure. Bill was born with HLHS and had a heart transplant when he was just a baby. Read the following extracts from his book. CHD-UK has read the book and I (Hazel) can honestly say that I relate to a lot of his emotions, and how he dealt with things.
Note: Bill Coon has given CHD-UK to publish extracts from his book.
GOING INTO TRANSPLANT
“…Everything seemed to happen quickly at this point. Before I knew it, three surgical nurses were in my room. They were dressed in powder blue scrubs. Each of them wore matching hair nets and a medical mask, one that I had yet to see anybody wear. It looked hard, almost concrete. It had three parallel lines flowing through the middle, the lines were wavy, ripple-like. I specifically remember one of the nurses. It was a male nurse and he was tan. The tan nurse asked me if I was ready to go, as he detached my bed from the wall and began carting me out my sliding glass door. I took one final look at the place that I had called “home” for so long. I smiled because I knew I would never be back in Room 810 again. The surgical nurses had a hard time pushing my bed into the hallway because the area outside my door was cluttered with so many of the people whom I had grown to adore over the past two months. I stared straight ahead and listened to the many familiar voices saying, “Good luck!” behind me. I was led down the same hallways I had taken on a multitude of trips, the same hallways that took me to my Swan catheters, the same hallways that were blurred on countless occasions when I could not see. On this day, the hallways were clear, so was my mind. I was incredibly focused. Since June 8th, I had been mentally preparing myself for this moment. It was the moment when the pain would stop and I could feel young again.
After a short elevator ride, I was wheeled into a new hallway, one I had never seen. This was the oddest part. The hallway was not how I had imagined it. The walls were made of white brick. They reminded me of the classroom walls in my elementary school. I was expecting something a little more regal. I was anticipating a golden light or for the Pearly Gates to open in front of me. Instead, I was wheeled through a cold hallway with multiple winding turns.
Finally, I had reached my destination.
The room was massive in size. The walls were white. In actuality, the walls were light gray but they were painted white by the overbearing bright lights that shined from above. Calling this room sterile would be an understatement. Two large monitors were staring directly at me from across the room. They had yet to be turned on. I assumed they were used to display all of my vitals during the procedure. There was a wall to my right that was dedicated to latex gloves and masks. The wall adjacent had plastic bins, which were marked with many words that I struggled to pronounce. Foreign machines stood to the left of my bed. It took me a few moments to realize they were the machines that would keep me alive. My analysis of the room was cut short when the Anesthesiologist stepped into my line of vision holding a large syringe. I was accustomed to seeing 5 mL syringes when my nurses would inject me with my diuretics and narcotics. This syringe was triple in size and filled to the brink. “Are you nervous?” asked the Anesthesiologist. “No,” I replied, “but I’ll take what’s in there,” I said jokingly. He laughed and quickly pushed the mystery fluid into my veins. I felt a rush of heat consume my chest as though the drug had ripped through my heart. In a matter of three beats, the warmth shot through my arms and legs. Every limb and every inch of my body was soothed with pulsating heat. I smiled. The room blurred and began to spin. The room wasn’t bright anymore, it faded to gray. The tan nurse looked at me with squinted eyes. The room went black.
I awoke the next day with a stranger’s heart beating inside of me.”
FROM: “THE FACE IN THE MIRROR”
“…My body looked bruised. Beaten by needles, tubes, and leads. Each bruise was perfectly preserved by my blood thinners in the shape of the object that had created them. It was almost like my body wanted to remind me that the Hell I had been through actually happened. That my life had changed, that my devastation was real.
I specifically remember not crying. I held it in. I stood there angry at the world, angry with God, wondering
why this had to happen to me. I started thinking about dying and what it would feel like. I don’t know if it was because I was in so much pain, but with one look in the mirror I accepted the possibility.
However, let me be clear of one thing. In that moment, I acknowledged the fact that I may die. Not necessarily that day or that week, but I did, for a moment, realize that I may never make it to my twenty-first birthday. I had a choice though, I could give into the notion that death was around the corner, that this disease was going to be my end. Or I had the option to keep pushing, to keep struggling, and live to see the day when the dark clouds that had been cast over my world opened, and the light would shine through. It would be on that day, I would know I had won.
I chose to not give in. I chose at that moment to do whatever it took to keep fighting. I understood that I might encounter some horrible days, that the pain of the defibrillator may become so unbearable I may want to end my life. I knew there were going to be setbacks, but that was when I dug deep down and I summoned the strength. I discovered my Will.
I chose to escape death.
FROM “MY BEGINNING”
I was born at St. Adrian Hospital in Barrington, Illinois to my mother, Ann Coon, and my father, William Coon Jr. My parents, like any other couple, were ecstatic. I believe the story goes that my Mom turned to my Dad and said, “Honey, It’s a boy! You now have someone to play football with in the backyard.” Little did my parents know that the son they were referring to is my brother, Gus, who was born years later in 1992. The son that my Mom was warmly holding onto was born with a birth defect. I was born with Hypoplastic Left Ventricle Syndrome. In laymen’s terms, it meant the left side of my heart was severely underdeveloped. It also meant I would require a heart transplant and my life expectancy clock of twenty-one days had just begun ticking.
FROM “THE PAWN ORDERS A PLASTY”
Bear in mind, my heart was not in good shape. Consequently, it had been known by all that my heart rhythms were a bit out of the ordinary. I was having PVC’s, (Premature Ventricular Contractions). On a heart monitor, they appear as giant drops, like out of control nosedives. I found the way the monitor displayed the PVC to be quite symbolic of my own life.
Aunt Deme and Nouna were standing at the foot of my bed when they each looked up at the monitor. Both of their eyes got large as though I was flat lining. I panicked at the sight their response and I was launched into another painful attack. I bit my lower lip and stared at the ceiling until it passed. My Mom had words with Aunt Deme and Nouna. They weren’t allowed back into my room.
I instantly grew tired when the attack subsided. I took advantage of my dark surroundings and fell back to sleep. I drifted off assuming I would be sent home the next day. I figured this was the end to all of the surgeries. I thought I would spend the next few weeks at home recovering and my life would go back to normal.
I’m laughing as I write this because I was so naive. I thought my walk through Hell was over.
I hadn’t even put on my shoes yet.
FR0M AUGUST 4TH:
“…I feel like I am back in the lost days because I only remember staring out my window, looking at the John Hancock building. There was a red construction claw-like object that was swaying back and forth like a pendulum. It mesmerized me and helped me keep my balance as I listened to my Mom’s voice echo throughout the room. I have no idea what she was saying, but I deliriously yelled out, “Everybody shut the fuck up! I don’t want to hear voices right now!” I believe my sister paged the nurse because she soon came in to speak with me about how I was feeling. I remember the nurse’s face. She seemed worried and hesitant to let me go. “Why don’t you lie down. You can leave in a few hours if you feel up to it,” she said. My Mom’s phone went off and both Carissa and my Mom left the room. My heart began pounding from my chest and I couldn’t help but cry. My Mom’s inability to understand my own individual needs caused my body to hit a point of distress that everything truly erupted. My body became scalding hot, I began to gasp for air. I may have experienced an anxiety attack. Carissa entered the room. She rushed to my bedside and began rubbing my head. “Shh! Calm down. It’s okay. It’s okay.” Carissa looked pissed. “I don’t know how you put up with her,” she whispered. I was still trembling. My Mom entered, she looked hesitant to approach my bed. I then finally told my Mom what I have wanted to tell her this entire summer.
“Don’t talk!” I said. “Just listen to me! I know you love me and I know you want me to be better, but you have to let go! I am a grown man! I am not a baby anymore! I can make my own decisions and I can speak my own mind! You need to back the fuck down! This is my battle, you need to understand that only I can fix it! You’re on the sidelines now! You need to give me my space! There are going to be days that I will be at school, I am going to be so sick that I am not going to be able to go to class or maybe even call you. When this happens you need to leave me alone!”
My Mom started to cry. “I never meant to hurt you. I only wanted to help,” she said as the tears slowly poured down her face. “I know, but you are only making it worse,” I replied. “I love you,” she said as she grabbed her bags and left the room. “I love you too,” I uttered after her.
She left my room an hour ago. It is 9:54 PM. I think I have achieved some independence. I feel grown up, even though I am hooked to oxygen and crying like an infant as I write this entry. I hope my Mom heard me when I told her I loved her…”
FROM AUGUST 24TH
“…I can’t keep my eyes open. When I am awake, I am severely nauseous and the room will not stop spinning. My hearing starts to go. I feel like I am paralyzed for a moment’s time. Eventually I get the strength to go downstairs. I seek food for the nausea, but typically it only dulls the sensation. It does not fully kill it. At that point, I cannot move. I feel my body convulsing from within. My Mom comments that she sees me occasionally shake. She asks me questions, but my brain does not seem to be moving fast enough to supply answers. I can only make gestures and nod. After I eat, the sensation in my stomach dulls. I become very tired and I fall asleep for two hours. This entire process has happened three times today. I am writing now because this is the only period of time in the day that I have felt strong enough to do so.
In a half-hour I am going to the hospital. We called Mercy, and they advised us that due to rush hour traffic, our best bet is to be evaluated at St. Adrian. If the results do not come back in my favor, I can be transported to Mercy in an ambulance. They do not think today is a result of my heart. All my symptoms are supposedly those of a failing kidney.
Something tells me that for the first time in my life I will be hooked up to a dialysis machine tonight, and if not tonight, then very soon.
The only positive I can find in any of this, is that maybe I’ll be up-graded to 1B.”
FROM AUGUST 25TH
“…A few hours later, I was transported to the operating room. It sounds chilling to say, but I had been in that room so many times up to this point, I was starting to remember the names and faces of the surgeons. What’s worse is that they were starting to remember mine. The doctor performing the catheterization came to visit me behind my curtain. It was a woman. A surgical mask concealed her face, and her hair and body were draped in long, sterile attire. She asked me to sign a consent form for the procedure, and began to take note of the drugs I was allergic to. I mentioned how the last time I had this very procedure performed, I felt the entire catheter slide down my neck. I told her how the doctor who performed my colonoscopy did some research at my request, and explained to me that I was given Versed. Supposedly Versed is only effective when mixed with another drug called Fentanyl. The day I had my biopsy, I was only given Versed. I requested that she gave me both drugs. She obliged and wheeled me into the room.
The operating room was cold, ice cold. I must have showed signs of hypothermia because an Italian looking nurse instantly wrapped me in a blanket. “I want to have a lot of drugs!” I yelled to the nurse over the loudspeaker that was blaring acoustic rock. “Don’t worry, I’ll give you Versed!” The nurse replied. “No! Not alone! That didn’t work for me last time! I felt the whole thing! Use Fentanyl with it!” I pleaded. The nurse stared at the doctor, then turned to me, “Okay! We will use Fentanyl!” Moments later I tasted the saline in my mouth. I knew they had just injected me with something. Suddenly, I heard the all too familiar sound of haze. I was drifting into a forced sedation. Everything turned gray around me, until it all eventually faded to black.
I woke up, it was Wednesday.”
FROM AUGUST 26TH:
“…It was then I lost the ability to breathe. The room went gray for a second. I fought hard through it, and when the gray dispersed I was able to suck in a mouthful of air. Any other breaths from this point on sent a stabbing pain into my back. I grimaced and Stacy asked me what was wrong. “It hurts to breathe,” I said. I started to take only short, intermediate breaths but even those scorched my lungs. “He has too much water in his body! We need to angle the bed so that the water flows down!” Stacy exclaimed to the other two nurses who had just rushed into the room.
It was at this moment that I thought I was going to die. I had lost total control over any body function, even the act of breathing was becoming tiresome. I felt that I was drowning, that my swim was coming to an end. The bed began to slowly elevate, bringing my head towards the ceiling and my feet closer to the ground. That was when I began to pray.
Please God save me.
The nurses were playing with the dialysis machine, examining it like they needed to repair it.
I feel as though I have led a great life up until now.
My Mom was pacing the floors directly to my left.
This cannot be my time to go.
I felt the sheets begin to slide down me, as my body began to angle perpendicular to the floor.
But if it is, please take care of my family.
My head rolled back. I was staring at the ceiling.
Wait… should I try to tell my Mom I love her?
With that, the lights in my mind went out. That’s all I remember from this brutal Wednesday.”
FROM SEPTEMBER 16TH:
Wednesday, September 16, 2009
“Waiting for the phone call that will save your life is far worse than knowing you are slowly dying an emotional death.
Anxiety builds as you wait for a phone call. Your mind begins to play tricks with you. You begin to think everyone is keeping secrets. You become convinced that everyone around you, including your nurse, knows something. The gestures and actions of the Residents begin to seem awkward. You wonder why they are talking to you as you convince yourself that they are a part of a secret society—a group of individuals that know your fate, but are sworn to hide the facts.
I’m getting tired of everyone texting me, asking if I have heard anything yet. It seems as though whenever I am able to get my mind off of the room phone, no sooner does someone contact me begging for an update. I think I need to send out a broad message to all my friends and thank them for their support, but at the same time ask them to stop questioning me about my phone call status.
Today was not an enjoyable day. I can’t stop thinking about life after transplant. It’s so close, but it seems so far away. I just want to spend a night alone in my studio apartment and have a day go by where I do not hear the words “kidney,” or “heart.” I want to be normal again. I hate being the center of the attention. I just want all eyes to be on someone else for one day. I want to be Bill again. I’m tired of being “the brave one.”
A ROUND TRIP TICKET TO HELL AND BACK
“I can tell you what Hell looks like. I’ve been there. I took an eleven-day trip through the fiery gates. I stared the Grim Reaper in the eye, laughed at his scythe, turned my back on him and kept pressing on until I found the hidden exit that was concealed by the flames.
Everything disappears when you’re in Hell. Your family, your friends, anybody who supported you is gone. In reality they may be there. They may be crying at your bedside, but mentally, you are alone. It is you versus the devil, a one-on-one battle to prove that you want to live. You need to fight to survive, and show that demonic son of a bitch that you still have a full life ahead of you.
You live your entire life as you search for this hidden exit. Your eyes are opened to the many mistakes you have made. You relive your regrets, you relive the happy moments, but mostly you see your future. You see everything that your life has in store, everything that is going to be taken away from you, as your body continues to deteriorate, and the horizon at the end of your swim is pushed further away by the changing tides.
It is at this point when you find the hidden door that you feel the heat of the concealing flames scorching your skin. You step back, and you ask yourself, Is this where I give up? This is a crucial moment because at this point you can say “yes,” turn around, walk back to the Grim Reaper and bow your head in shame as he takes your life with his scythe. Or you can say to yourself, No, I have come too far, and I am willing to get burned. Walk through the fire as you feel the flesh melt off of you, reach for the door with whatever strength you have left, and walk through.
The beauty is found when you close the door behind you. The air is cool, your energy has returned. You look down to discover that you were never burned in the first place, you were restored.
I began my trip through Hell on Saturday, October 10, 2009. I did not open the door until Wednesday, October 21, 2009, and I did not close it until two days later…”
FROM JANUARY 25TH:
“…Three months ago, I completed my first long-term goal of surviving. Almost a month ago, I completed my second long-term goal of living alone in my studio apartment. Today, I completed my final long-term goal.
I became twenty again.”
3rd March 2011To buy the book or other books, go to Books related to congenital heart defects