Moebius Syndrome Tim Smith -Affairs of the Heart!
I have never really been sick with anything other than a cold or the flu. Not in my worst nightmares did I ever imagine I would end up in the Cardiac Intensive Care Unit at Fairfax Inova hospital.
At approximately 5:00 am on Saturday May 2nd 2010 I had at least twenty wires attached to my body from feet to chest. I had three iv’s in each of my arms. A blood pressure wrap dangled around my left arm and every five minutes it came to life squeezing my arm and turning it purple.
I wasn’t sleepy and didn’t feel like watching TV so I let my mind drift back in time to contemplate the events which brought me here.
In late winter as the snow and ice began to melt from the street I noticed I was not breathing as deeply as I used to. The simplest tasks like walking around the house, or climbing a couple flights of stairs left me short of breath. I blamed it on the 40 plus pounds I had gained in the last two years from eating too many WaWa donuts and Roy Rogers Cheeseburgers
The March winds brought a change of climate and a new ache to my right arm, shoulder, and chest. At first I thought I strained a muscle. It made since because I’m an exterminator and I carry a large spray can around all day on my right side. I switched carrying arms to see if that would make a difference. No such luck!! The pain came and went. When it came I was eating Tylenol like candy to surpress it.
In early April as the Tulips and Daffodils began to bloom I took myself to Next Care Medical in Fredericksburg, Virginia to find out what was going on. After running a few tests and not finding anything they referred me to an internal medicine doctor.
The internal medicine doctor listened to my breathing for a couple of minutes. Gave me a physical. Then a nurse gave me a breathing test. Afterwards he told me he didn’t see any signs of anything going on with my heart or lungs. He sent me on my way telling me to call in a couple of weeks if things did not improve. I wasn’t impressed with the guy and knew I wouldn’t be calling him, but I was relieved that my problems weren’t anything serious. (Or so I had been told)
April was a strange month. I stayed in a very quiet, somber mood. My shoulder hurt 24/7 and as time passed the Tylenol became less effective. It was difficult to sleep at night and when I did manage to fall asleep my dreams were all about past events. My life’s story played out in the dreams. The good the bad and the ugly.
At night when I worked from the computer I almost always listened to music over the headphones. I usually listened to upbeat country or rock. The usual stuff just wasn’t cutting it. I found myself listening to religious music and country tunes from my childhood. “Amazing Grace” and “The Old Rugged Cross”, were two songs I found myself listening to a lot.
Wednesday April 28th 2010 was a bad day. My work route was messed up. I had three customers reschedule at the last minute. My shoulder was constantly throbbing. It’s difficult to think happy thoughts when you are in physical pain. All morning long despite my best efforts I kept thinking about a few unpleasant events from my past. By doing so I was throwing salt into an open wound and the pain increased. From out of nowhere I burst into tears crying like a baby. It lasted for about thirty seconds. I looked around to make sure no one had seen me.
“What the hell is going on here?? This isn’t me!!” It was at this point when it dawned on me that something was very wrong. The ever increasing throbbing in my shoulder told me I needed to go see a doctor to get a second opinion. I decided I would go after work Thursday night. I could not go that night because I had made a promise to someone and I wasn’t going to break it.
Thursday was a very long day. It was after 9:00pm before I got into Fredericksburg. Next Care Medical was closed. My shoulder was killing me, but I had lived with it this long so another night wouldn’t kill me. I just wanted to go home and chill in front of the TV. At around 10:30pm the whole right side of my chest and shoulder was on fire for about thirty seconds. I swallowed a hand full of Tylenol.
I felt better on Friday. For the first time in what seemed like forever the Tylenol kept the pain at bay. I thought about skipping the doctors visit. A tiny voice inside my head told me to go. As soon as I saw the doctor at Next Care I told him what was going on. They took a chest xray and did some blood work. Shortly after that the doctor told me I had had a heart attack within the past twenty four hours!!!
He also told me that my blood pressure was through the roof and I needed to get to the hospital asap. They wanted to call an ambulance for me. I wanted to get out of my dirty work clothes and take a hot shower first. If I was going to meet my maker that night I wanted to be clean. Next Care let me go but they made me sign an AMA form. (Against Medical Advice) As I was leaving I said goodbye to one of the x-ray technicians who I was acquainted with. She didn’t say anything. She just stared at me. If looks could kill… I knew she thought it was bad.
I went home took a shower and changed clothes. Sharon Deveney, who is a moebius mom, drove me to Stafford Hospital and stayed with me for an hour of so. “Thanks Sharon!” After talking to my sister Sherrie on the phone I decided to have myself transferred to Fairfax Inova Hospital. It is where my sister in law Brenda works and it’s one of the leading cardiac hospitals in the country.
(As I look back on it now I clearly see all the signs. The dreams, the music, and the crying episode, was my mind and bodies way of telling me something was wrong and that the clock was ticking down. If anyone reading this ever goes through a simular experience don’t be dumb and do a TIM!! Get medical attention right away!!)
My vital signs stayed strong all day and I was released from intensive care late Saturday night and placed in a regular room on the cardiac ward. The very first thing I did was check my phone and email messages. I was very pleasantly surprised by all of the messages and emails I had received. Sharon Deveney put out the word that I was in the hospital and people from all over the world sent me their prayers and well wishes. It was overwhelming. Thank You very much.
I stayed in the hospital for four days. According to the doctor I was right on the borderline between needing bypass surgery or stints. They put three stints in one artery. Then sent me home for a week of rest.
I went to the doctor’s office the following week and after viewing the ultra sounds they took it was determined I needed more stints. Hopefully this would do it. I agreed and they scheduled the appointment.
Three days later I was back in the hospital. Two more stints were put in and after spending the night in the hospital for observation I was sent home. Next! Two weeks of rest. Then a stress test.
All I had to do was walk on a treadmill. The stress test should have been easy. Two years earlier I could have done it hopping backwards on one foot. It didn’t take long before I was out of breath. The person conducting the test tried his best to encourage me to continue. I was pissed off and embarrased at how poorly I was doing! After I got off the treadmill they did a magnetic imaging scan of my heart. I was told to come back next week and see the doctor.
Shortly after I got home my right arm and shoulder started hurting. The pain was not that bad, but it was in the same place as before. The stress test must have caused it to act up.
When I told the doctor about it at my next appointment he said the magnetic imaging scans showed their was a weakness in the back side of my heart. It was the part of the heart which controls blood flow to my right side. He thought the problem could be solved with more stints, but it was going to be a little trickier this time.
On Wednesday June 9th 2010 I went back to the hospital for the third time in a little over a month. Since I had gone through the procedure twice before I knew the routine. That morning nothing followed the routine. I hoped it wasn’t a sign of things to come. I was wheeled to the cath lab around 8:30am, an hour later than scheduled. As soon as I got there they gave me some gas and I was out like a baby.
During the two previous surgeries I awoke near the end of the procedure. This time I awoke in the critical care unit. The doctor was not able to put any stints in because the artery was completely blocked. They also found loose substances in the arteries which had been previously opened by the stints. They feared this may cause another heart attack or possible stroke. I was told bypass surgery was needed. They set it up for the following Tuesday. The doctor told me going home then coming back was not an option. A short while later i was taken to a regular room.
The surgeon came into my room Thursday afternoon and explained the operation to me. I told him I had a very strong gag reflex from having moebius syndrome and was worried about waking up from surgery with a bunch of tubes down my throat. I explained to him that when I was a kid I was put to sleep to have several teeth removed. When I awoke I nearly choked to death because they had my mouth filled with cotton. I didn’t want to go through it again. The doctor assured me that would not happen. There were medications they could use to relax the gag reflex. This was my only big concern. I really didn’t want to know the details. I knew I was going to be diced, sliced, and spliced. It was all I needed to know.
Sunday was a strange day. The nurse kept coming into my room asking me if everything was allright. I was hooked to a monitor and apparently my heart had paused a few times. I couldn’t feel anything. At around 9:30pm I was sitting in the chair and I got a pain in the groin. It felt like someone had kicked me. Two minutes later the nurse came in and told me I had another pause. I told her what happened and asked for a couple of Tylenol. The Tylenol wasn’t working and by 10:30pm I was buzzing the nurse asking for something stronger. She told me to lay down and sleep. The doctor would check on me in the morning. The pain worsened. I explained to the nurse that I didn’t have any facial expressions because of having Moebius Syndrome. I told her I knew she couldn’t see the pain on my face, but I needed her to trust me when I said I was in pain. I told her I felt like something was going to rupture. I spelled the word out for her. She left the room and said she would be back in a few minutes. It took her an hour and a half to come back in with a little yellow pill. She blamed the length of time on the pharmacy.
The pill did nothing and the pain kept increasing. I was curled up in a ball on my bed. I called the nurse and told her she needed to do something fast.
Right then every fiber of my being told me if I had anything I needed to do to, do it then. I picked up the phone called my brother and asked him to bury me next to our parents.
Ten minutes later I was curled in a fetal position on my bed praying for the pain to go away. The nurse came in with two Tylenol in her hand and asked me to sit up. She was clueless!
I sat up, but then felt myself free falling into the darkness. I knew exactly what was going on. It was Game Over! I didn’t want to stop playing. I knew I had to keep breathing. I focused all of my remaining energy on breathing. Each new breath confirmed I was still among the living. The next thing I knew I was being pushed down the halls on a stretcher surrounded by at least ten people. There was an oxygen mask over my face and many new IV’s in my arm. I knew I was going to be okay for now.
I was taken for a cat scan and they found out i had been bleeding internally. The bleed was caused by the stint catherazation they did the previous Wednesday. It was rare but not unheard of. I lost four units of blood!
I was taken to the CCU unit where they finally gave me a shot for the pain. I was also given two units of blood! They said my magnesium was low so they gave it to me through an iv in my hand. Within five minutes my hand swelled three times it’s size. They took the iv out of my hand and put it in my arm at a slower rate.
I was told I needed to stay in CCU for at least two day. Surgery was postponed until Friday.
On Tuesday afternoon Jacob Licht the treasurer of the Moebius Syndrome Foundation came to visit me. I thought it was pretty cool that he traveled all the way from Maryland to visit me in the hospital. Thanks Jacob!
On Wednesday I got kicked out of CCU and sent to a regular room to rest for a couple of days before I had surgery. I wasn’t in the room for five minutes when one of the surgeons came in and told me they were going to wait until Monday to do the surgery.
At around 8:00pm while I was sitting talking to my cousin Betsy who had come to visit me I felt a chill and shivers shot through my body. I called the nurse and she said it was probably just the air conditioner. Which by the way we were no where near. A couple of hours later I feel asleep without incident.
I woke up at 1:00 am with chest pains. I called the nurse and told her to bring some nitro tablets. After taking one the pain subsided. My blood pressure was a bit high, but the rest of my vitals were normal. A few minutes later a lab tech came in and did an EKG. I then went back to sleep.
I slept for less than an hour. I was freezing cold and shaking uncontrollably. I buzzed the nurse and asked for more blankets. She came in and checked my vitals. My temperature was 103.6 degrees. I could not stop shaking. They had to give me pain medicine through my iv to calm me down.
For the next five days I ran a very high fever. I do not remember some of what happened during that period. I remember my sister in law Brenda coming to visit me two or three times a day. I remember my nurse Barbara taking great care of me. Even when I threw up on myself, refused to eat, and had chills, sweats, and uncontrollable shaking. After two or three days of this I could feel my body slowly shutting down.
Everything came to a head on Saturday night. I could not eat or drink. I could not take my medicine. My stomach felt like it was lined with poison. As the evening hours passed my temperature rose. I was determined to break the cycle of the uncontrollable shakes and everything that came with it. I was sitting in the chair next to my bed with my feet propped up. I had at least a dozen blankets covering me. I kept thinking warm thoughts. At around midnight, despite all my best efforts I started getting the shivers and shakes. It wasn’t long before I was shaking uncontrollably. My back was killing me. The nurse gave me a shot of diladin through my iv to lessen the pain. It didn’t seem to work. I asked him if gave me the right dose? I passed out from the pain.
When I awoke I had no clue where I was. There was a security guard at the door. I was shaking uncontrollably. I was hot and covered with sweat. My first question was; “Did I do something wrong?” My second and third question was; “Where the hell am I and what has happened?”
The nurse told me where I was. He said I tried to leave the hospital and it took three people to get me back in the room. What was I doing in the hospital? Nothing looked familiar. The only part of the story I believed was that it took three people to get me back in the room.
After I calmed down the security guard left. I asked the nurse for a glass of water. As soon as he left the room I called my sister and asked her what was going on? As she took me through the story my memory slowly returned.
I don’t remember anything from the next day other than the nurse telling me that the surgery had been canceled.
The doctor came into my room Monday morning and told me all of my problems were related to my liver enzymes being very high. They had different theories as to what was happening. They thought I might have picked something up from the blood transfusion, but all of the tests came back negative. Another possibility was that the internal bleeding shocked the liver. Or they thought the medications I was on might be causing some of the problems. They suspected it was a combination of things.
All of my medications were stopped. All of the iv’s were removed except for the fluids they gave me for nourishment. Within 24 hours I started feeling better. 24 hours after that I was sneaking to the vending machine and buying M&M’s 🙂
Many people were trying to figure out what was wrong with me when I was running a high fevor. My sister Sherrie wondered if it could have anything to do with me having Moebius Syndrome? She wrote a post on facebook asking if it were possible. I knew there was no relation but did not find out about the post until after my head cleared. Sherrie contacted Vicki McCarrell. President of the Moebius Syndrome Foundation. From what I understand they talked on the phone and exchanged a couple of emails. Thanks Sherrie for trying to find the answers. Vicki! Thanks for helping her out. Also thanks for sending me the get well card.
On Monday June 28 2010 the doctor came into my room to tell me surgery was set for Wednesday morning. I had rested for a week. I was ready to have it done that day!! Enough is enough. I wanted it over with so I could get out of the hospital and continue on with my life.
At 7:30 am sharp the orderlie came and took me to be preped for quadruple heart bypass surgery. They must have quickly slipped me a mickey because I only remember being in the prep room for about five minutes.
The first thing I noticed when I awoke was that my brother Doug and sister in law Brenda were in the room. “Thanks guys!” The second thing I noticed was the tubes stuffed down my throat. At first I could not breathe. Then when I bit down on the tubes the air flowed freely. The next thing I noticed was that my hands and feet were strapped down. I could not move an inch.
I must have been going in and out of sleep. I heard the nurse say the doctor was going to pull the tubes out in about twenty minutes. The next thing I knew he was standing above me. The nurse was standing next to him. Brenda was standing off to the side. I was expecting the doctor to pull about six or seven inches of tube out of my mouth. It was more like three or four feet worth. I DON’T want to know how they got it in me. As soon as the tubes came out the nurse used a high pressure oxygen hose to fully inflate my lungs.
I spent two nights in the intensive care unit. The first night I got into a verbal altercation with the charge nurse because he refused to switch my pain medication from diladin to morphine. Diladin messed with my head and it was what I was on the night I blacked out. I didn’t want a repeat incident. The nurse refused to change my medication. I cussed him out and threatened to beat him up. Seriously! I stayed awake the entire night. The next night they gave me the morphine and I slept peacefully.
They transferred me to the step down unit early Friday morning. It’s the last place you go before going home. At around 8:00am the nurse came in and said we were going to take a walk. She told me she wanted me to walk twenty feet. I had not walked in three days. I had not stood up since the night of the surgery and I needed assistance to do that. The heck with all of this I was ready to go home. I got up and started walking. I didn’t stop at twenty feet. I walked the whole perimeter of the step down unit. I was slow and I wasn’t walking in a straight line, but I did it without any assistance.
I got out of the hospital twenty five days after I went in. Sunday July 4th 2010 was my Independence Day!
Where my heart is concerned my medical prognosis for the future is excellent. There was very little damage to the heart muscle and my heart beat is very strong. I do not need a pacemaker or any more surgeries. I do have to make some lifestyle changes so I don’t find myself in this situation again. I’ve already started working on those.
Recovery starts the day you leave the hospital and lasts for six weeks. By the end of the recovery period you should be able to walk at least a half hour without stopping. On Sunday July 18th 2010 I walked for an hour without stopping. I did it again the following night. For me it is a big deal because two months ago i couldn’t walk around my house without having to stop to catch my breath. Now! “I’m Gonna Fly!!!”
and the adventure continues………………………………………………
Timothy Gray Smith
I’ve had to overcome several obstacles in my lifetime. If I can do this then so can you. I’ve learned through trial and error that it is all about believing in yourself. It’s about having faith in yourself. Faith is contagious. Once people see that you have faith in yourself and that your putting your best foot forward they will have faith in you as well. Things will fall into place. Life is not always fair and bad things will continue to happen. When they do happen we have to find a way to turn lemons into lemonade. Most importantly no matter what happens we have to continue to move forward. No matter who you are, where you are, or what your circumstances in life are, you can do this. I believe in you. I have faith in you. click link.. “Faith of the Heart!”
Moebius Syndrome Awareness Definition Shirts
One great way to support the Many Faces of Moebius Syndrome and spread awareness is by purchasing a Moebius Syndrome Awareness Definition Shirt. They sell for $17 each and come in two colors, different styles and different sizes. The front of the shirts say “Moebius Syndrome” in big bold letters. On the back of the shirt there is a brief definition of what Moebius Syndrome is! After you’ve purchased the shirt we will send you 10 free business cards with the same wording as the shirts to pass out to people who want to learn more about Moebius Syndrome. Sale ends soon get yours today. Click here to order.