Life over Limb
This week I went to the hospital and had my left leg amputated. I was thrilled about it.
In an article I wrote earlier this year, I shared how I went from addressing a room full of private equity investors to fighting for my life within a matter of hours. Despite being perfectly healthy, I had contracted a rare disease that affected every major organ, destroyed my limbs and resulted in months of reconstructive surgery.
My left leg was the most profoundly affected. I lost my foot and a considerable amount of flesh. Surgeons at Sunnybrook Health Centre in Toronto rebuilt most of the leg with massive skin grafts and muscle flaps. I pushed hard through rehab, relearned how to walk and use my hands and then attempted to re-engage my life with as much normalcy as possible.
For the most part, everything worked out. I could walk and talk; my energy was returning fast and my body was responding to the workout regime. I was grateful for every day and still am. The leg, however, was a constant problem. I no longer had a foot on which to distribute my weight while standing; instead, all the pressure was concentrated on a small group of bones surrounded by scar tissue. The flesh in the area kept breaking down and needed constant attention. The pain was severe, relentless and hard to control - Imagine you are a 200 lb man forced to squeeze into size six high heels – and then you have to run a marathon – and then someone tells you that you can never take the heels off for the rest of your life. That’s how it felt most days.
Pain will change you
Over the course of this ordeal, I had learned a great deal about pain and how it works. The most terrible lesson I learned was simple but profound: over time, inevitably, chronic pain will change you. Pain changes how you move, how you act and even how you think. It changes your chemistry. No matter how sophisticated any pain management regime might be, the pain caused by putting weight on the mess of scar tissue and bone that used to be my foot would soon start to make me different from who I was. I love my kids and my wife, and I love who I am when I am with them. I could never allow this to happen. And so, only a few short months after brilliant surgeons had worked mightily to save most of my left leg, I made the decision to amputate it.
A Heuristic For A Hard Decision
There were two big hurdles I’d need to clear in order to get this thing done. And ironically, they were two hurdles that I was intimately familiar with from my years as a CEO.
First and foremost, I had the problem of the sunk costs of the leg. I had suffered considerably to save the damn thing. Numerous procedures, grafts, painful scar management and months of therapy had been invested. So, I had to come to terms with the fact that I would have to go backwards in my process – in this case, the healing process - in order to go forwards and overcome. As a baseline position, backwards motion is not how I’m wired - I really only understand forward motion. And when I’m moving forward, I really only understand two speeds, fast and too-fast. But I’ve seen enough to know that sometime the only way forwards is backwards, and sometimes a slower pace will get us to the finish line first.
Second, I had the problem of sceptical stakeholders. There were the surgeons who had worked so hard and invested so much in saving my leg; convincing them that I was not depressed or otherwise mentally compromised, that the decision was medically and personally sound, and that we should stop trying to fix it and cut it off now would not be easy. And then there was my wife and kids. They had all suffered through this ordeal, and I could see how badly they needed it all to be finally over. My plan required taking a bunch of scary steps backwards towards more surgery, more hospital time and more uncertainty. It frightened them and it frightened me too– so it made sense to consider myself a sceptical stakeholder, too .
How would I convince all of these stakeholders that this was the best plan? I decided to approach the problem like I’d approached other hard decisions in the past: I would conduct my due diligence, guided by clear logic and a truckload of analysis. I would ask my doctors a thousand focused questions and scrutinize their answers until I understood all the factors. I needed to research the state of the art in prosthetics, and I needed to hunt down and talk to others who had been through a similar set of complications and decided to make the same choice.
Ultimately, I boiled the logic down to three statements:
1- My leg is only going to get worse as I age.
2- The technology replacing my leg is only going to get better.
3- There is no advantage in waiting.
Points 1 and 2 were true statements 100% of the time. Point 3 was likely true approximately 80% of the time. Point 2 was actually the key to selling my kids. They loved the idea of daddy having a “bionic leg”. And the tech is really quite amazing; arguably even better than the real thing. The doctors, meanwhile, were a tougher sell. They had to do their jobs, so we all played our positions and eventually got on the same page on the three points.
The only thing standing in my way now was O.R. time. My surgeons were swamped and had considerable backlogs of patients who needed work done as badly as I did. Even if one of the surgeons were free, we still needed to find an open O.R. slot. So the waiting began. This was the toughest part, I had made the decision and now had to wait for what would become weeks before I could have the work done. As I’ve already suggested, I am not good at waiting for things. I don't know why, I guess I equate waiting to failing. The instructions were now simple: when a spot opens up, we will call you. So be ready.
In the weeks that followed, I tried to engage in activities that would help minimize my post surgical recovery time. I learned how the procedure would be done, what muscles and nerves would be involved etc. I knew I would be stuck in a bed with limited mobility and that would make me weaker. It would be weeks before the wounds would fully close and the swelling would level off enough to be fitted with the first set of prosthetics, so I would have to be strong enough to move my own weight around while missing a leg. I shifted my workouts to focus more on pushing exercises with my good leg and pull ups with my upper body; I also dropped 15 pounds which helped. And then suddenly I got the call to come in and get it done. And while it messed up my weekend plans substantially, I was thrilled.
Taking The Step Back
Much to my surprise, they gave me the option to have either a general anesthetic or an epidural (spinal) and sciatic (nerve) block. In the second option (the one I chose) you don't feel anything below the waist; and you can be somewhat awake (or mostly asleep). Women who have had an epidural during childbirth know what I mean here. They also know how much it hurts when the anesthesiologist misses the epidural space multiple times while digging around in your spine with a needle.
The operation took two and a half hours. It seems like there are faster ways to take a leg off but there is a lot of rather careful cutting and sewing and cutting to be done. This ensures a good “stump” from a mechanical perspective and a site that has a better chance of being pain free once healed.
Despite my efforts to remain awake and somehow participate in my own surgery, I remember very little. I recall some very distinct sounds; the rest was a blur Towards the end I know I asked my surgeon if I could see my leg. He told me it was already in the morgue. I wondered why they whisked it away so fast. Do people wake up and change their minds screaming to put it back on?
Aftershock
After surgery they rolled me back to my room. I sat alone in my bed looking at my legs. The spinal block had not fully worn off yet but I could feel the pain starting to build. The “phantom pain” was hitting me first. Despite the fact my leg was gone below the knee, I could feel everything from my toes right to the wound site. As my doctor would say “your leg is in your brain now” and my brain was interpreting the loss of nerve signals as pure pain. I had an infuser pumping anesthetic into my leg. I was allowed to give myself .2 mg of hydromorphone every 5 minutes if needed by pressing a button. The infuser made a happy little sound every time I pressed it. But as far as I could tell, that was about all it did. By midnight the rate of pain increase was overtaking the rate at which I was taking in medication. Picture a breakwater steadily becoming overwhelmed by the crashing of rising waves from a tsunami. It was a very long night.
The next morning, we tuned the pain meds in a little by adding Lyrica and Ketamine. I was suddenly no longer in pain for the first time in months. The wound itself is wrapped in a clear plastic dressing with a suction pump attached to it. The pump draws away fluid from the wound site and promotes healing. I suppose the fun part of having one of these dressings is that you can pretty much see everything. Before the procedure my leg was a mess of reconstructed tissue so it’s interesting to see the choices my surgeon made with respect to creating a flap and sewing into the scarred skin grafts. By that afternoon, the whole site was quite swollen, giving the residual limb a disproportionate look. The swelled flesh pressed on the clear plastic dressing and started to resemble the packaged meat you buy at the supermarket – ok, that is a little too much to share I know…but it really did! - In few days, we will open up and change the dressings and have a closer look at the actual healing. That will be the first data point indicating how long this phase of the recovery will take. With a little luck, I will be going home in time to see my kids in their Halloween costumes.
The decision to amputate my leg would have been easy to avoid. I could have jealously defended the progress I had made so far and spent the rest of my life, blamelessly justifying myself through my pain. It would have been easy because I didn’t have to step backwards and because I wouldn’t have had to deal with the horror of it all. It was no one’s job to advise me on how to cut off a leg. There are no soothing best practise to follow that could provide certainty, no collective logic to hide behind and no undoing it. I have never had to make a decision like this before. I am grateful to those who listened to me and helped me sort it out. Though I am thrilled to now be on this path, I truly hope none of you are ever faced with the same thing.
