Make your experience count.
The Gift: Paul Kocher's Experience With Necrotizing Fasciitis
This story is dedicated to my wonderful wife, Lisa. We all know that when you get married you sign up “for better or for worse…in sickness and in health”. Lisa has had to live that reality in spades for well over a year now. She has been there for me when I needed it most. While I like to believe we already had a strong marriage, this situation has made it even stronger. I guess sometimes you never really know how good you have things until you find yourself in a situation like mine. There is no doubt in my mind that I wouldn’t have made it through this ordeal without her.
A number of people have encouraged me to document “my story”. Not being a writer by profession, I have not felt compelled to do so until now. I like to believe there has been nothing psychologically that has been stopping me from doing it. Perhaps I just needed some time to let things settle. Perhaps it is the fact that I don’t have all of the pieces of the puzzle to tell the story completely. Perhaps I realize that if I don’t record some of these thoughts now, the effects of getting older will prevent me from capturing them as well as I would like to do. Regardless of the reasons or excuses for not doing it before, the time has come.
One of the key triggers for getting me to put fingers to keyboard was signing up to MyChartTM , which is an online portal service offered by Sunnybrook Health Sciences Centre were patients can view, create, and manage their personal health information based on clinical and personal information. A friend of mine made me aware of this service and I was intrigued, so decided to sign-up. I didn’t know what to expect at first, but what I found there was fascinating. Virtually every test, procedure, and result associated with my medical history was at my finger tips. Suddenly, all the good, the bad, and the ugly was right before my eyes. As I wrote to my friend in an email, ‘it is like the big “black box” of the medical world has been opened to me.’
For those of you who enjoy and expect a riveting story line with a good development of the characters, a great plot, a logical flow, lots of twists and turns, and all the loose threads sewn up neatly at the end, brace yourself for some disappointment. I tend to be a ‘get to the point’ kind of guy, so lack the patience and skills to build all of that stuff in.
The other caveat I will offer is that some of what you read may make you feel uncomfortable. While I have intentionally excluded a lot of the graphic facts of my situation, there are some parts that may cause your stomach to turn. All I can say is ‘relax’, this feeling will pass eventually.
One final note. The reality of my situation is that I was heavily medicated for a large part of the journey, so I may not have all the facts captured completely and accurately. Hopefully that won’t detract too much from what you read.
Enough preamble…on with “my story”…
Houston, We Have a Problem
I have always prided myself on being a very healthy person. In my entire educational and working career I can never recall being sick for any length of time, be it a short or long period. Sure, I have had my share of colds and flus like everyone else, but my stubbornness and pride never let me succumb to those illnesses. I still have a vivid memory as a young boy all of 4 or 5 years old feeling ill at the breakfast table. There was a special concert at school that day and there was no way I was going to miss it. I managed to get to the end of our property as I began my walk to school and proceeded to throw-up on the sidewalk. My mother had to forcibly escort me back into the house, as I had full intensions of continuing my journey to school. On reflection, I guess it is those traits that played a key role in making it as far as I have come today.
I remember waking up at my usual, fairly early time on Sunday March 2nd, 2008. I had flu-like symptoms, which I refer to as that cold, clammy muscle-ache feeling you get with the onset of the flu. I tend to be a person who does not like taking medication. My wife, Lisa will tell you that regardless of how much I complain about a headache or some other ailment, I refuse to take anything for it. Beyond my trademark stubbornness, I guess I was always taught that if you take medicine too often it will not work for you when you really need it. Nonetheless, as I was scheduled to serve as an usher at Church that morning, I took a couple of ibuprofen and soldiered on. The day played out pretty much as usual and I remember going to bed earlier than usual, given I wasn’t feeling well.
When I awoke on Monday morning, I fully expected to feel like normal. When the flu-like symptoms continued, I was upset. I thought to myself, what is going on here. I never get sick. Not unlike that childhood episode, I decided to push on. My thinking at the time was, given I thought I had the flu, it would be best not to give it to other people and I didn’t really feel well enough to drive into the office, so I worked from home. I had a variety of conference calls that day, and it was clear to people that I was not well. Towards the end of the day I had a call in preparation for an important meeting the next morning that I was due to lead. I remember saying to the team on the prep call that I fully expected to make it into the office the next day, but in the off chance I couldn’t make it, I would call into the meeting.
Much to my surprise and growing dismay, I did not feel better come Tuesday morning. When I did not show up for the meeting and instead made my presence known on the telephone, not sounding well, I could tell that other people were starting to be concerned about me. I remember having discussions with a number of people throughout the day explaining how I “never get sick”. Clearly my long, healthy streak was starting to come to an end. I did manage to finish out the day working from home, but I realized that something was amiss. Accordingly, I called my doctor and booked an appointment for that Friday. It was an appointment that I would never keep.
Wednesday brought the same symptoms. I continued to work from home. I recall that I was shivering and Lisa draped a blanket over me as I sat plugging away at my keyboard. As the day wore on, I noticed one additional symptom that hadn’t been there before. My left leg started to hurt.
The area of pain was familiar to me. It was my psoas (pronounced “so as”) muscle, which is a large muscle that runs from your trunk area down towards your quadriceps. You may wonder how I know what a psoas muscle is. I can assure you that I am not medically trained , although a number of doctors and nurses I have come in contact with throughout this ordeal have suggested that I deserve an honorary degree in medicine. The reason that I know what a psoas muscle is comes from the fact that I had some difficulty with that particularly area of my right leg and the chiropractic student who was treating me at the time taught me about it and the types of stretches that I needed to do to make it feel better.
I remember feeling very uncomfortable as I approached the end of Wednesday, wondering when this would ever end.
As Thursday arrived, things continued to deteriorate. Nonetheless, I refused to give up and proceeded to begin working from home as I had done the previous three days. I was scheduled to have a conference call later in the morning with a number of my work colleagues. I remember having an instant chat with the person who scheduled the call and indicated that there was a good chance I would not be able to make it for the call. This person is one of my Partners and he has a dry, cutting sense of humour not unlike my own. He sent a reschedule notice for eleven days out, as I was due to leave on March Break in the coming week. In his notice he included the phrase ‘Paul has the flu today…a well known strain called “Labatts-itus”’.
At that stage I did something I can’t ever recall doing. I stopped work and headed up to bed. Lisa came up to the bedroom and saw me there rolling around and moaning, unable to get comfortable with the pain in my leg and continuing flu-like symptoms. I could tell she was worried, as she had never seen me this way before.
I spent a large part of the rest of the morning in bed. Lisa called the doctor’s office and explained that although I had an appointment for Friday, I was in a lot of pain and wanted to know what we should do. She explained that I had some leftover morphine pills from when I had kidney stones and asked if I could take those to try to relieve the pain. The doctor’s office agreed we should give this a try and that we would see how I faired.
The medication didn’t really help that much. I decided that I would continue to work, as I had things I needed to get done. For the benefit of my work colleagues who read this, the reality is that my forecast was due and there was no way I was going to miss the deadline. Little did I know it would be one of the last emails I would send for many months. The reality is that beyond my stubbornness, I really had no idea how sick I was, which probably was a good thing.
By Thursday afternoon I was back in bed, rolling around and moaning. This continued into the evening, with no relief in sight. At about 10:30pm, I remember calling to Lisa who was downstairs and saying that I couldn’t take it any more and that she needed to take me to the hospital. While Lisa knew I was sick, I think she was probably humouring me by taking me up to the hospital when all I had was the flu.
Ignorance is Bliss
The scene in the emergency room waiting area of Sunnybrook is what you would normally expect and imagine. There were lots of sick people sitting and waiting. I was sitting in a chair moaning fairly loudly at this point. The triage nurse took my vitals as Lisa worked with the emergency room staff to document my health information. After my vitals were completed, I returned to the waiting room area with the rest of the sick people. It looked like it was going to be a long night of waiting.
Within five minutes a couple of porters turned up with a wheelchair and I was whisked off to the back of the emergency room area. At this point, I was in intense pain. They ended up giving me three rounds of morphine before I finally got relief from the pain and succumbed to sleep.
On Friday morning I awoke on an emergency gurney/bed and still really had no idea how sick I was. The proof of that fact came when I asked the ER nurse if she could get me my cell phone. I recall her looking at me like I was an idiot and saying something to the effect that you are not allowed to use cell phones in the hospital. So I then asked her if she could get me to a phone. Puzzled, she asked why. I explained that I had a lot of calls and meetings today and it looks like I may need to cancel them. She rolled her eyes and eventually got me a portable phone that is used in the hospital. I left messages for a number of people, apologizing that I would likely miss our meeting. I talked to my boss, who I was supposed to meet with in the afternoon and explained that it may need to wait until after March Break.
Given how I approached this situation, my work colleagues also had no idea how sick I was. One fact that drove this home was an email my dry humoured Partner sent me early Friday morning. As part of our instant chat on Thursday when I indicated I wouldn’t be able to make our conference call, he made a funny remark about having my wife nurse me back to health. His email on Friday read “Paul – are you going to India… week of March 24? ps: when you didn’t respond to my “Lisa nurse outfit” sametime I couldn’t decide whether you are losing your sense of humor or you really are sick !”. It turns out that the India trip was not to be.
Having dealt with the necessary business matters, I laid on the gurney/bed as they took my vitals. The nurse was not happy with my blood pressure, which had dropped significantly. I called home to Lisa and told her they were getting ready to take me to the Critical Care Unit. I seem to remember her gasping and telling me she would be coming back to the hospital as soon as she dropped off the kids. This was not good.
There were no Critical Care beds available on Friday morning, so they wheeled my gurney/bed to a private area of the emergency room area. They hooked me up to a number of IVs and started to run a battery of tests, trying to figure out what was going on.
I was very thirsty, but they did not want me to have any fluids. What I realized after the fact was that they both wanted to keep my system clear as they expected they would need to operate and it turns out my kidneys had shut down.
One of Lisa’s friends who is a social worker at Sunnybrook spent a large amount of the day with us and she got some swabs, which she would dip in water to allow me to have a small amount of fluids. I found myself almost begging for another swab as the day wore on. I was very grateful that she was there for me and more importantly for Lisa, who clearly was worried.
You may be wondering at this point as to whether I was worried. To be honest, I was too ignorant to be worried. As I have said many times, Lisa is a lot smarter than me. She knew something was very wrong and a conversation she had with my mother-in-law, who is nurse, confirmed this fact. Having heard the story from Lisa, my mother-in-law paused for a bit longer than normal. Lisa knew that her mother was worried and when she was worried, we all should be really worried.
Despite the fact that I was heavily drugged and tired, I was conscious and alert for most of the day on Friday. There was a plethora of doctors and nurses milling around me consulting one another and making plans. At one stage I overheard one of the doctors who was involved earlier in the day provide a brief history to one of the doctors who just became involved with my case. They were standing on the other side of the curtain around my bed area. He said something to the effect ‘Mr. Kocher, an otherwise healthy forty three year old male…”. I removed a tube from my mouth and shouted out “I’m forty two”. Lisa laughed. Beyond my lovely wife, a sense of humour was one of the few things I had left at that point. Both of them would become very close and important companions for me on the journey on which I was about to embark.
One of the doctors in the emergency room area was on exchange to Sunnybrook from Norway. I overheard him having a spirited debate with the other doctors. The topic of discussion was over how quickly they planned to operate. He was strongly advocating that they operate as soon as possible. The other doctors wanted to wait to see what developed. I am grateful that the Norwegian doctor’s perspective carried the day.
On Friday afternoon a bed had opened in the Critical Care Unit, so I was wheeled up. They had lined up a number of hospital services to perform surgery on me. There was General Surgery, Plastics, Urology, and Orthopedics, in addition to the Infectious Disease team. They took turns examining me and asking me questions. One of the common questions was ‘are you sure you didn’t cut yourself recently or suffer blunt force trauma to your lower extremities?’ I told them I had gotten a sliver in my left foot on a trip to New York I had taken earlier in the year, but they eventually ruled this out as the cause of my situation.
One of the last teams to examine me was the Urology team. As they pulled back the bed sheet, I remember looking down and saying “as much as I would like to lay claim to those things, they normally aren’t that big and they normally aren’t black”. Lisa described them as overripe avocados. The physical signs were finally starting to show. Even I began to realize at this stage that this was very serious.
That said, I still had my wits about me and my questioning nature was still alive and well, even if my body was less so. After all the various services had finished their examinations, they gathered outside my room and I could hear them having a lively discussion as to who would lead the surgery. One service would say something like ‘I think you should lead’ and another would say something like ‘no, I think you should lead’. Eventually the head doctor of the service team who was going to lead came in to see me. I immediately went into ‘client’ mode, drawing upon my consulting experience. I began to ask about the credentials of the members of the surgical team, whether they had worked together as a team before, who was project managing this surgery, etc. Those who know me well who are reading this may be smiling or laughing right now, but these seemed like very logical questions to me. The head doctor looked at me like I was from outer space and probably wondered if they had overmedicated me.
As the time for my first surgery drew nearer, I could see the worry etched on Lisa’s face. I remember holding her hand, looking her in the eye and saying “I am not going to make you raise our three children on your own…I will make it through this”.
After she left, I prayed for longer than I ever remember praying.
But For The Grace of God I Go
The porters then came in and wheeled me to the operating room for what would be the first of many surgeries. My life had just changed forever.
One of the next memories I had was waking up after the surgery and seeing Lisa at the end of my bed. I was back in the Critical Care Unit. She told me at that point that I had flesh eating disease (which is referred to in medical terms as necrotizing fasciitis). My immediate instinct was to reach for my left leg, as Lucien Bouchard’s case popped to mind (you may recall that he lost his leg to this disease). Lisa told me to relax. My leg was still there, although there was a point when they debated taking it, along with one of my kidneys.
The next part of the story gets a bit foggy for me. Lisa tells me that I was in a coma-like state for about ten days. In addition to necrotizing faciitis, I got toxic shock syndrome. As an added bonus after that, I managed to contract c. difficile. Turns out that all those antibiotics they bombarded me with not only killed all the bad bacteria, but also knocked out the good bacteria whose job it is to fight off superbugs of this nature. There were a number of surgeries during this stage, all of which I can now read about through MyChart. Those people who know me know that I like to keep track of numbers. Here are some of the statistics from my stay at Sunnybrook. I will admit these are not 100% accurate, as both time and many medications make the tracking a bit challenging:
• 4 surgeries to remove the necrotic (dead) tissue
• 12 trips in total to the operating room with general anesthesia
• 49 units of blood
• 14 IVs running through me (they needed to put them through a manifold to avoid entanglement)
On balance, the folks in the Critical Care Unit were very competent and compassionate. I had my own dedicated nurse 7/24, given I was in a pretty delicate state. I was on kidney dialysis and a ventilator for a while, and was also intubated. To lift my spirits, Lisa brought in pictures of our three children, which hung above my bed, so that when I opened my eyes they would always be with me. Wisely, Lisa also took a picture of me lying in my Critical Care bed to show the kids to prepare them for what their father was going to look like when they came to visit. Certainly not a pretty or uplifting sight. She showed the picture to my son James, who apparently didn’t speak for three days after seeing it.
After I regained some strength, I was well enough to start eating solid foods again. On my first day of being able to eat solids Lisa, God bless her, made sure I finished absolutely everything that was given to me, as she wanted me to get well. The challenge with that is given I hadn’t eaten solid food in quite some time, my stomach was not used to doing its usual digestive work. The result was I felt awful the next day. To add to this feeling, one of the residents came by to see me and started to discuss how, on balance, things had worked out well for me. He said something to the effect ‘well, the good news is that you have survived, but it is unfortunate that you are going to lose all the toes on your left foot…” I looked at him in a puzzled fashion and asked what he meant. This was the first I heard about this situation. The poor fellow almost turned white. It was clear that he thought I had been told and realized he just told me in a very casual and nonchalant fashion. I must admit I did not take the news very well. I was already not feeling well due to digestion problems with the solid food and this certainly didn’t help. On reflection, the resident had it right. I was a lucky guy to be alive and the loss of toes was minor under the circumstances, although it certainly didn’t seem so at the time.
The Road to Recovery
One thing I was very focused on throughout this journey was getting well as quickly as I could. I wanted to get some exercise, but was still immobilized, so I asked if the physiotherapist could give me some weights so that I could strengthen my arms. There weren’t any proper weights available, so the nurse taped up some different size saline bags for me to use. I worked out as often as I could, notwithstanding I was told on a few occasions that I may be overdoing it a bit.
Eventually I was well enough to be moved to the Intensive Care Unit. I know, that must sound odd, as most people think there ICU is the most intensive level of care, but Critical Care tops it. In the ICU, there is one nurse for every two to three patients, compared to the one-on-one care level in the CrCU.
My most memorable moments in ICU were the weird food cravings I got. For some reason every thing tasted salty, including the water, so I had my family bring me in lots of ginger ale and bottled water. I also got fixated on orange jello at one stage. Lisa spent many days making and bringing loads of the stuff to the hospital.
One day in the ICU the doctor from Norway who I remembered from the emergency room area was doing rounds on the other side of the unit. I called over to him and he came to my bedside. I asked him why he was so adamant about having surgery done so quickly. He explained that necrotizing faciitis was a lot more common in the Nordic countries as well as certain parts of Asia. He had seen many cases and moving quickly was essential to saving the patient, as it is known to spread very quickly. I thanked him for advocating on my behalf.
One thing I took notice of in the ICU was the number of uniformed police officers that always seemed to be there. I asked my nurse one night why they were always there and she answered that they were there for the safety of all the patients and staff. What I learned later is that there have been cases of patients trying to injure themselves or other patients, as well as people from outside the hospital trying to injure patients, including gang members who come in to ‘finish the job’. A little scary, I must say.
Eventually I was well enough to be moved the general recovery unit. One of the interesting things we discovered when I got there is that I had five medical appliances that needed power, including my bed and other devices that were providing me with needed medication and painkillers, however there were only four outlets in the wall. I asked whether they could use a power bar to add more capacity, but it turns out that these appliances all needed to be plugged into the wall directly. When I asked how they were going to resolve this dilemma, the answer was they would run one off of its battery power and when the battery wore out, they would rotate. I must admit I was a bit uncomfortable with that answer. I asked what happened if the battery ran out on an important appliance and there was no one available to plug it in? The nurse kind of shrugged her shoulders and said she didn’t think that would happen and the good news is that it never did.
The lack of outlets also led to another problem. One of the things I was very diligent about was my hygiene. I equated washing my hair, shaving, etc, with part of being ‘normal’ and I was very focused on returning to normal and getting home. I have an electric shaver, so it needed to be recharged periodically. Given all my outlets were in use, I had Lisa plug-in my shave in the outlet by one of the beds in the ward room that was empty. The next morning I asked the nurse to give me my shaver and she replied ‘what shaver?’ I responded that my wife had plugged it into the outlet a ways away from my bed. She said there was no razor there anymore. Someone had pinched it during the night and it was never to be seen again.
While I am sure most hospital administrators would cringe at this next statement, being in the hospital has a lot of similarities to what I imagine it must be like being in prison. You tend not to be free to go about as you please. There are people in uniforms who constantly keep a watchful eye on you. The food, while nutritious, is sometimes lacking in flavour and variety. I had many different roommates (cellmates?) during the course of my stay in the general recovery unit. Typically we would introduce ourselves when a new patient arrived and the first question we would ask one another was “so, what are you in for?”.
The similarities between the hospital and prison didn’t stop there. I must say I had some very rough characters there with me in the ward room. One young man was there with multiple gun shot wounds, including one that had nicked one of his lungs. He had many interesting visitors and this was a time I took great comfort in all the uniformed police presence we had. Near the end of my stay there was a very nasty young man who had been stabbed multiple times in the face. It seemed that every other word out of his mouth was a swear word and he used to give the doctors and nurses a hard time, including crying at times when they gave him a needle. One thing I learned very quickly is you need to build a good rapport and relationship with your caregivers. If you are good to them and only call them when you really need them, they will go the extra mile for you. I used to shake my head at the young man with the facial stab wounds, as all his cussing got him was a longer wait and less sympathy.
Not all of my fellow patients were as bad as these young men. I remember one gentleman who had been involved in a terrible accident on Highway 401. A transport truck carrying a load of pigs rear-ended him and virtually crushed the utility truck he was driving. I remember reading the paper one day, which was one of my favourite things to do to pass the time, and his story was in the paper. I shouted over to him and gave him the paper to read. Much to both of our dismay, the storyline was all about those poor pigs who ended up running around on the highway after the transport truck rolled and caught fire. So much for the power of the press.
As time passed on, I could see the toll that my stay in the hospital was having on my family. There were days when Lisa came to see me and I could tell she was very stressed, trying to hold everything together. I told her that there was no doubt in my mind that she loved me very much and I certainly loved her, so she didn’t need to come see me each and every day. Her job was to look after herself and the kids and my job was to focus on getting well and getting home.
There was a point in time when James became very depressed. He didn’t want to go to school nor participate in activities. Lisa and I talked about it a lot. I told her I remembered the first time I saw my father in a compromised state of health and how devastating that was for me. You think that your parents are invulnerable and that they will always be there and suddenly you realize they are human just like you and me. To help James through this period, I asked Lisa to give he and I some alone time the next visit she and the kids came to the hospital. We talked about what was making him sad and it was clear that he was missing the time we typically spent together and he was worried I may never be able to do the things we had done together in the past. To help him focus on more positive things, I asked him to make a list of all the things he was missing and the things he wanted to do when I got out of the hospital. I believe it helped him get past his blue feelings and it also gave me extra motivation to get better and get home.
I continued to workout in bed each day, lifting my saline bags. One day I woke up with a pain in my upper left arm. I thought that perhaps I overdid the arm exercises the day before, so my muscles were just a bit sore. The resident on duty came by to do his usual rounds and asked me how I was doing. I told him that I was fine other than this pain I had in my arm. I was about to start my exercise routine when he told me very emphatically that I needed to stop and not exercise anymore until told I could do so. I must say that I was puzzled. A little muscle ache was no big deal. It turns out there potentially was more to it than that. One of the common side effects from lying in bed for too long is that you can develop blood clots. The resident was concerned that I may have suffered a pulmonary embolism, which means a blood clot had come dislodged and traveled to my lungs. There was a risk that the blood clot could dislodge again and travel to my brain, which would be fatal. They sent me for a number of ultrasounds and CAT scans and eventually discovered that indeed I did have a blood clot, but this one was still in my leg. They refer to this a Deep Vein Thrombosis (DVT).
At this stage, the normal treatment involves putting the patient on a medication called warfarin (also known as coumadin). For those with a medical background, you will know that this is the same stuff that is used in rat poison. It is a blood thinner, which works to prevent future clotting.
About after month of being at Sunnybrook, my surgeon came by to visit me to see how I was doing. A fair number of people who visited me over the course of the past month told me how rare the disease I got was. Accordingly, I remember saying to the surgeon in somewhat of a cocky voice ‘so, I guess that must have been pretty rare seeing a case like mine’. He looked at me and said. ‘actually we had three other cases come in the week you came in’. I did not know what to say. I was speechless.
As my health gradually improved, the day finally came for me to stand on my own. Having spent about a month in a hospital bed, my muscles had atrophied somewhat, so this was no easy feat. My physiotherapist wanted to help me out of bed, but in my typical stubborn fashion I insisted on doing it myself. What I told her was that I was not adverse to accepting help when I needed it, but if I didn’t need it, I preferred to go it alone. With my feet dangling over the side of my bed, I pushed up with all my strength and eventually managed to stand. While it felt like I stood for an hour given how much my muscles ached, I only managed to stand for a few seconds. Nonetheless it was a triumph and much needed motivator to try to do more.
Over the next few days, I practiced standing some more and was able to stand for progressively longer periods. Then, the day finally came for my physiotherapist to get me to walk, although I wasn’t aware that is what she had planned for me. Given how unsteady I was on my feet, she had arranged for a high walker, which is a balanced medical device with wheels that you can in essence rest your arms and shoulders on and then walk in a supported fashion. I managed to stand and positioned myself on the walker. My physiotherapist started to instruct me in terms of where to bend each leg and position myself. It felt like one of those golf lessons where you are listening to the instructor and you know at the end of it you have no hope of hitting the ball. I was getting frustrated as I listened to her instructions, trying to figure out what exactly she was trying to get me to do. She was saying ‘lock this knee like this, bend the other leg like this’, etc. Eventually she touched me gently on the shoulder, looked me in the eye and softly said ‘just like you are walking’. At that point I realized how far I had sunk…I no longer knew how to walk. It is a moment I will never forget.
Spending a long time in a hospital bed not only weakens your muscles, but you typically also lose weight. I remember one day Lisa had come to visit me and I remarked to her that I think I may have lost five to ten pounds. She looked at me and laughed and said ‘sweetie, try like twenty five to thirty pounds’. I didn’t believe her at the time. I eventually went into the washroom with my walker and got a look at myself in the mirror for the first time in a long time. I almost didn’t recognize myself. Lisa was right. I refer to my experience as the new magic weight loss plan. No special diet or exercise. Just give yourself two months in the hospital and presto, off comes the weight.
As my strength and stamina improved it was time to turn my sights on leaving Sunnybrook and beginning rehabilitation. I needed more work on relearning to walk, as well as the opportunity to strengthen my muscles. A social worker came by and we discussed the options. Typically what happens is there are a variety of rehabilitation hospitals you could be sent to and whichever had the first open space, that is where you were expected to go. At that point, I learned that you needed to actively manage the healthcare system on your behalf as opposed to it managing you. A couple of my Partners who are very well connected in the healthcare community started to lobby on my behalf to get me into St. John’s Rehab Hospital, which I had heard had a great reputation. They each lobbed calls into the CEO and the CEO advised that I should basically refuse to be sent anywhere but St. John’s. I was transferred to St. John’s shortly thereafter and it turned out to be a great decision. It certainly helps to have friends in high places!
As I was preparing to leave Sunnybrook, my surgeon dropped by for one last visit. I said to him ‘about a month ago when you visited, you commented that there were three other cases that came in the week I came in…what ever happened to those other people’. He looked at me and said ‘you are the only one who made it’, then he paused and said ‘no, wait a minute, one of the three made it’. I was shocked. I realized just how lucky I was to have survived.
Just before I left for St. John’s, Lisa’s friend who worked in the social department of Sunnybrook stopped by to see me with a gift. As I opened up the box both Lisa and I began to laugh. She had brought me a supply of the swabs she used to give me some fluids way back when I was in the emergency area. A very fitting present indeed.
St. John’s is an older facility, but the folks there are very good at what they do. Most of them have been there for many years and they know how to get you moving. Their philosophy is that they never turn down the bed sheets, as you are not meant to be in your bed for any length of time. The long laneway that leads to the main building is literally called “The Road to Recovery”.
I remember when the physiotherapist first came by to see me. She had me stand up and position myself on a high walker. It was a very shaky transfer indeed and she made it clear that I was not to get out of bed without supervision, as she was concerned I might fall. Clearly there was lots of work I needed to do.
Most patients at St. John’s have a scheduled physiotherapy session every day. A specific routine is worked out based both on your injuries and your capabilities. While St. John’s was a wonderful facility, I was keen to get better and so was exercising in bed outside of my regularly scheduled physio. Between my scheduled physio sessions and my own exercises, I was able to get out of St. John’s in a little less than one month.
Just prior to leaving St. John’s, I had my first check-up appointment back at Sunnybrook with my surgeon. He proceeded to check me over and we discussed recovery plans going forward. At the end of the check-up he said something to me that I will never forget. He looked me in the eye and said. “listen Paul, I don’t want to jinx you, but when I first saw you back in March, I never thought you would leave the hospital”. This gave me a better sense of how lucky I was to have beaten the odds.
Towards the end of my stay at St. John’s, we arranged for a trial run where I would come home for the day to start and then arranged for an overnight stay, so that both I and my family had a chance to adjust to me being home and out of the hospital. I must say that both visits were quite an experience. One of the big things we needed to do in preparation for these visits was to get my medications together. I remember picking up a large brown paper bag on my way out, which contained more pills than I probably have taken over the course of my entire life. We needed to work out a system with labeled ziplock bags to ensure I took the right pills at the right time. I was lucky that I had a drug plan, as the pills certainly cost a fortune.
It Feels Good to Be Home
It is hard to describe how I felt the day I left the full-time care of St John’s for good. In some respects it was the end of a very long and challenging journey. In other respects, a new journey had just begun. Getting back to normal would take some time.
My initial recovery routine when I got home consisted of gobbling lots of pills, regular visits from my Victorian Order of Nurses (VON) nurse, and lots of physiotherapy. I also had lots of visits to see my surgeon as well as my general practice doctor. At times I felt like a ‘frequent flyer’. I got to know most of the medical staff on a first name basis and when I turned up for an appointment they would say ‘oh, Paul, no need for you stand in line to check in. Please have a seat and we will be with you shortly.’ Certainly not the loyalty club I was aspiring to join, but I guess, as they say, membership does have its privileges.
During one of my visits to see my surgeon, we began to discuss how we were going to address the necrotic (dead) toes on my left foot. There were basically two options. The first option was to do a quarter foot amputation. The second option was to ‘let things occur naturally’. The first option had a number of downsides. First, it would require surgery, which always presents a risk. Second, studies have shown that patients experience more ‘phantom’ pain when appendages are removed surgically. By ‘phantom’ pain, they are referring to experiencing pain in the area where appendage used to be. Finally, if they proceeded surgically, they would need to take more of the foot than going ‘naturally’.
Given the downsides that the doctor described, we opted to go ‘naturally’. We then got to the point of discussing exactly what that meant. The doctor basically said that the toes would dry up over time and once the tissue underneath them had sufficiently healed, the toes would just drop off, similar to what happens when a scab heals over a wound. Upon hearing this, Lisa looked at me and said “you are wearing socks to bed every night. I don’t want to wake up to dead, loose toes in my bed!!”.
So we proceeded to wait for the departure of my necrotic toes. During this period and beyond, I have had to wear sandals virtually every day for more than a year now as all the bandaging and residual pain prevents me from putting on a regular pair of shoes. The reality ended up being somewhat different than we planned. Instead of just drying up and falling off, my toes began to loosen, leaving some exposed bone. We were left with little choice but to start taking the toes one by one.
The first toe to go was the top half of the toe beside the baby toe, which was removed surgically on July 30, 2008. The next toe to go was my middle toe, which was removed surgically on August 27, 2008.
As you can imagine, this whole experience with necrotizing faciitis had been anything but fun, so I decided it was time to have some fun. I decided to start a ‘toe pool’, not unlike a lot of the baby pools that we had in our neighbourhood. The premise was simple. All you had to do was to guess the date and time of when the last toe would go and you won half of the funds collected. The other have would be donated to Sunnybrook.
The reactions I got from the toe pool ran the gamut from horror and disbelief to hearty laughs. Some people thought this was incredibly morbid. Others thought it was a great way to show that this disease hadn’t beaten me or my dry sense of humour.
The final toe, which was the great (big) toe, was taken on October 22, 2008 at 1:13pm (or 13:13 on the 24 hour clock, which is quite fitting). The winner of the toe pool graciously donated his winnings to Sunnybrook, so they got all of the money that we raised.
Over the course of my recovery at home I had a large number of visitors, which I greatly appreciated. Invariably, the visit would begin with me retelling the story of how this happened to me (i.e., flu-like symptoms, sore leg, emergency room, surgeries, etc.).
One of the visits I had was from my Partner with the dry sense of humour. I retold the story of my illness, we had a nice visit and he went on his way. About two weeks later I got a voicemail at home that indicated “your experience just saved someone’s life”. I was certainly intrigued and so got in touch again with my Partner. He proceeded to tell me a story about a friend of his who lives down the street from him. His wife had called over to my Partner’s house indicating her husband had been up most of the night with the flu and his leg hurt. My Partner was emphatic that she needed to get him to a hospital immediately. She indicated she needed to get to work and besides she thought it was just the flu, so she was going to leave him for the day. My Partner rearranged his schedule and proceeded to take his friend to the hospital. It took them a long time to be seen and my Partner explained that while he was not medically trained, the symptoms that his friend had were a lot like mine. The folks at the hospital indicated that it couldn’t be necrotizing faciitis in their view, but unbelievably that is what it turned out to be. The doctor who worked on my Partner’s friend indicated that had he been brought into the hospital six hours later he might not have made it. I was amazed by this story and it was great that something good had come out of my experience.
As the summer passed, it came time for us to head off to the camp where my family and I
have spent many parts of our summers over the past ten years. Each year there is a family camp where the parents get the opportunity to participate in the activities in the same fashion as their children. One of my favourite activities in years passed has been the zipline. Think of it as two very large telephone poles at either end of a small football field linked together towards the top by a wire. You start at one pole and ‘zip’ your way to the other pole. You are harnessed in tightly and wear a helmet, so it isn’t as dangerous as it sounds. When we first got the zipline at the camp, I was keen to try it. It was a challenge to climb the pole and you had to put aside certain fears as you moved off the edge of the platform that sits atop of the first pole. Over the years I got so used to doing the zipline that it no longer presented a challenge, so I stopped doing it. This summer, as I was still working through my recovery, I felt compelled to try it again. The main reason was I knew it would be a big challenge. My muscles were still quite weak from inactivity and so getting up onto the zipline was not going to be easy. A number of folks thought I was crazy to try it and convinced me that I should do something called ‘zip by choice’ where you start in the middle between the two poles and use a ladder to get yourself up onto the zipline. I managed to get up the ladder and then was pulled towards the first pole using a tether. I was then free to experience the thrill of once again flying through the air, which was exhilarating. It was a triumph I needed to aid me in my recovery.
My recovery has taken a lot longer than I hoped and planned, and has included regular physiotherapy to both strengthen my muscles and improve my flexibility. At this point in time my physiotherapist has told me that I am fully functional, meaning that the strength and flexibility of my left leg is comparable to my right leg. That said, I know that my left leg is weaker than my right and likely always will be so.
After taking the last toe, they decided to leave the area open and use a pack dressing to start. What this meant was that I had a large, gaping hole at the end of my foot and the skin needed to grow in, including around the main bone in the area, which is called the metatarsal. During this process, we have had to keep a watchful eye that I did not contract osteomyelitis, which is an infection of the bone. Periodically I would go for visits to Sunnybrook to see my surgeon and when it appeared that the skin wasn’t forming properly over the bone, he would excise (cut away) bone from my foot using an instrument called a rongeur. The rongeur is like a big pair of needle nose plyers with a bow in the middle. My surgeon used the rongeur on me so often that he began to refer to it as “my little buddy”. While I certainly has not trying to be a hero or a martyr, it got to the point that he would use the rongeur on my foot without an anesthetic, as I found that having a needle in my foot hurt more than having him cut bone out.
A total of more than six months passed since taking the last toe as we patiently waited for the skin to granulate (grow) over the bone. During this period, there was a dressing on my foot that needed to be changed every day. On the days when my VON nurse didn’t come to see me, Lisa did the dressing for me.
Eventually we came to the conclusion that the skin was not going to grow over the bone and so I would need surgery. The procedure would involve an excision (cutting out) of the rest of the metatarsal and then sewing up the skin so that it no longer drained. In preparation for this procedure, I had a pre-surgical examination to test my blood and vitals, as well as evaluate the options for anesthesia. The anesthesiologist who examined me asked me what happened as she looked at my chart and when I told her she suddenly looked up and pointed at me smiling saying “I know you!!, I know you!!”. It felt like getting the ‘rock star’ treatment. It would seem that my case was somewhat rare and she also commented on the positive attitude that I maintained whenever she saw me. I went into MyChart a few days later and read her transcript report that she sent to my surgeon. I liked her closing statement, which read “Thank you for giving us the opportunity to see this wonderfully resilient man looking so healthy”. That statement made my day.
My (hopefully) final surgery went off without a hitch and while my foot is quite sore at the moment, it looks like I may finally be close to the end of what has been a long road. It has been a journey I will never forget.
Just the Facts
As I reflect on this experience, there are many of what I refer to as “Thank God” facts.
“Thank God” fact number one is that I am extremely fortunate that the medication I took when my symptoms first surfaced didn’t relieve the pain. If it had, I would not have headed to the hospital and I probably would have died.
“Thank God” fact number two is that I live less than five minutes away from Sunnybrook, which is arguably one of the best medical facilities in North America for dealing with a situation like mine. Had I gone to another hospital, the outcome may have been radically different.
“Thank God” fact number three is the excellent job the triage nurse did when they brought me in. Regardless of whether it was my moaning or my symptoms, I was treated very quickly, which played a big factor in catching this disease before it was too late.
“Thank God” fact number four is that this happened as soon as it did. Had these symptoms not started to appear until three or four days later, I would have been headed to the United States for March Break. Had that occurred, I may not have received the quality of care that I did and I would likely be carrying a huge mortgage on my house right now as a result of the medical costs I would have had to pay.
“Thank God” fact number five is all the wonderful doctors and nurses both at Sunnybrook and St. John’s Rehab Hospital. In particular, I am forever grateful for the doctor on exchange from Norway. Had he not carried the day in the debate over the timing of my first surgery, I may not have made it. I am also indebted to the surgeons whose skills not only stopped the spreading of the disease and removed all the dead tissue, but also did so in a manner that enabled me to keep all my limbs (minus some toes) and organs. Finally, the team at St. John’s worked wonders for me. They got me from barely being to walk using a high walker to walking with a cane within three weeks.
“Thank God” fact number six is that the power of prayer and positive thinking can overcome even the worst of circumstances. I can’t begin to thank my relatives, work colleagues, neighbours, other friends, and even complete strangers who prayed for me and loaned me their positive thoughts and energy. The visits, the phone calls, the cards, the meals they brought to my family, the looking after my children so that Lisa could be with me, the shoveling of our snow, the running of errands for Lisa…The list goes on and on. Beyond maintaining a positive outlook, one thing was very clear to me. While this may sound strange, there were so many people in my corner throughout my illness that I felt an obligation to better. This had a huge impact on how quickly I have managed to recover. When you have that much love and support coming your way in such a short span of time, in a word, it is “humbling”. I am forever grateful.
The last and certainly not least “Thank God” fact is how extremely lucky I am to have my wife Lisa. She was a rock throughout this ordeal. Not only did she have to address everything on the home front, including dealing with the children, but she was also there with me at the hospital for as much as was humanly possible. I can’t even imagine how stressful and sad it must have been for her to watch me lie there helplessly, knowing there was little she could do to change my situation. The other reality is that after being discharged from hospital, she has had to continue to look after me. On the days when my VON nurse is not scheduled to be there, Lisa is the one who changes my dressings. Sometimes I am sure she feels like she has four children instead of three. No one will be happier than Lisa when the day finally comes when I can say goodbye to my sandals and all the medical supplies.
Something For You
A lot of people have remarked about the positive attitude I have maintained throughout this situation. They seem amazed that I could be so upbeat given all that I have been through. I must admit that I find this puzzling. To me it is very simple. I am doing what comes naturally and what I believe you and anyone else would logically do if you were faced with this type of situation.
First and foremost, nothing I can do will change what has happened. Lamenting, getting angry, and wondering will not change the outcome, so I see those reactions as not a good use of my time nor the time of those around me. Sure, I am human like everyone else and there were times that I didn’t feel as positive as I could be. The biggest time that comes to mind was the day I was told I would lose all the toes on my left foot. At the time, I think the hardest thing for me to accept was the fact that I would always have a permanent reminder of what I went through and that I would never be ‘normal’ again. Now that those toes are all gone, I realize that you just naturally adjust and drive on. Things like that only hold you back if you let them. While I may never be able to run a marathon, the reality is I was never going to win an Olympic medal for running in the first place. I have yet to acknowledge or accept there isn’t anything I can’t do now that I couldn’t do before. My classic stubbornness and pride won’t let me.
Second, as bad as my situation may seem, I certainly am not complaining, as I have been given the chance to live and I know that others have it much worse than me. I saw a lot of people in the hospital who may never leave and who may never return to some semblance of a normal life. I certainly feel sorry for them. That said, I don’t expect nor want people to feel sorry for me.
Third, when you come as close to death as I did, everything after that is upside, which makes you feel really good.
Last but not least, I feel that I am a very lucky man. The good news is that the worst of this ordeal is behind me. When people ask me to describe my situation to them, I give them an answer they typically don’t expect. I describe this as a “gift”. It is a gift of life when the odds were that I was going to die. It is a gift of unimaginable support at a time when you need it most. It is a gift of perspective that enables you to understand and appreciate what is really important in life. It is also a gift that is hard for people to know how to accept unless they have been in a situation like mine. Nonetheless I feel compelled to share this gift whenever I can.
Many people have told me that they feel better after hearing my story, as they no longer feel so bad about their own situation. I certainly don’t tell my story with that purpose in mind.
Nonetheless, I hope that my story helps you in some small way.
If it does, please feel free to pass on “the gift”.
-- Paul Kocher
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