Resilieincebook

I was asked by our psychiatry department to give a talk on recovering from the loss of my leg. I tried to decline several times, but they kept insisting that I give a talk. But I didn’t really know how I recovered, I just did it. For some reason resilience seemed to be part of my being. How was I going to explain to the psychiatry department how I recovered?  My brother Steve had just completed a book on Resilience. I had read sections while he was writing his book and made editorial suggestions, but now I read the book with an eye toward applying what I read to my own experience. I discovered that Steve’s book allowed me to structure my talk and explain how I recovered.

How do psychiatrists define resilience or ehe ability to “bounce back” : The process of adapting well in the face of adversity, trauma, tragedy, threats, and significant stress (family problems, health problems, workplace and financial stress). I also learned that their 8 components to bouncing back:

1. Optimism

2. Courage to face your fears

3. Having a strong moral compass: meaning, purpose and growth

4. Religion and spirituality

5. Social support

6. Role models

7. Cognitive and emotional flexibility

8. Physical fitness and strengthening – competitive sports

Over the next series of posts ,with the help of my brother Steve, I will describe how I bounced back with the hopes that you can apply my experiences and strategies to your own life’s challenges.

You can watch my talk by hitting the title of my talk:  Overcoming the loss of my leg: My Path to Recovery

 

Heat of Chattahoocheesm

After succeeding in getting my boat into the water, I began training. After several months I was able to remove the pontoons. In addition I began practicing with my local rowing club, Gainesville Area Rowing. What a wonderful group. Each time I came to practice the carried my oars down to the dock and waited as I strapped my prosthetic foot into the boat. On the water I felt far less handicapped. I my training to build up my core strength meant that I was able to stabilize the boat even more effectively than before my injury. Everyone actually liked rowing with me because the boat remained very even keeled in the water allowing all the rowers to use their oars effectively. Finally on July 27th 2013 the big day had arrived. I returned to Halifax Florida where the year before I had experienced so much calf pain during my rows.  I had thought I had a severe calf pull. I never would have imagined that a year later I would be rowing with a prosthesis after losing my leg!

My first race was in 4-man boat. I was in the 2nd seat next to the bow man and the number 3 rower. Would I be able to keep up the rapid 30/minute stroke rate? Everyone else had two legs. As we surged off the line I had no trouble managing my blades and slide. The boat moved easily and rapidly through the water. The 1000 yards went by very quickly, and I felt great at the finish. We came in second out of 5 boats. I had won my first medal. On November 1st I stroked a 4 man boat in the Head of the Chattahoochee a 3 mile race. For this race I was able to set the pace and we maintained a stroke rate of 28/min and finished in a time of 17 minutes 45 seconds traveling at over 6 miles per hour. We finishing in the middle of the pack.

My team wanted me to compete in the Southeaster Ergometer Sprints. You pull a flywheel and the machine counts your strokes and distance. The world record for 1000 meters for an above the knee amputee was 3 min 45 sec. Could I break this record? I accepted my team’s challenge. Byron my trainer designed a 2 month training program and on February 1st I competed. I kept an even pace designed to break the record, but in the last 200 meters my good leg fatigued. My time 3 min and 53 seconds. I missed by 8 seconds, but I was pleased with my performance. Next year!

I haven’t posted in quite awhile. Why? Because for the last 6 months I have devoted over 125 hours to creating a course that will provide you with the tools to fix our healthcare delivery system. Every system is designed to produce the results it achieves, and unfortunately at this time our healthcare systems are inadvertently designed to harm patients.  You will learn how to apply the principles that high performing manufacturing systems to continually improve quality, you will learn how to apply the lessons you learned in team sports to becoming an integral member of your healthcare team. When patients become part of the healthcare team they are far more likely to receive higher quality, safer and more efficient care. You will learn how to recognize impending errors and dangerous conditions so that you can avoid harm. One of the most important lessons I will be teaching is how you can become an adaptive leader, a leader who can bring about change, and goodness knows our health systems need to undergo dramatic changes. And finally I will teach you how to organize others to achieve the goal of continually improving healthcare delivery. The course is free and it is offered through the University of Florida and Coursera. The Institute of Healthcare Improvement with the help of Michael Briddon has generously offered a number of teaching modules that have been incorporated into our course. Upon completing the course you can become part of the solutions. If everyone makes one or two small improvements every week or month our systems of healthcare delivery will steadily improve. WE ALL CAN MAKE A DIFFERENCE.

https://www.coursera.org/course/fixinghealthcare

I was very pleased to be back on the water rowing. However, there was one huge problem with my first row. Four people were required to help me launch my boat. If I always needed others to help me to get the boat in the water, I realized I would rarely be able to row. I didn’t want to inconvenience others. Furthermore, the best time of the day to row was 6:30 AM when the water was calm. I knew I wouldn’t be able to find anyone willing to carry my boat to the water at that time of day.

How could I launch the boat on my own? Prior to my injury I had carried to the boat on my head and walked it to the lake, but this maneuver required great balance, and was impossible with a prosthetic leg. Perhaps I could pull a wagon, but my free rowing knee collapsed whenever the prosthetic toe caught on the grass.

“Dad, why don’t you buy an ATV and drive the boat to the lake?”, Ashley suggested. Yes, that made good sense. I could drive the all terrain vehicle  to the lake shore  and then set the boat down into the water. That very day I purchased an ATV.

The question was how could I use this machine to carry my boat? The shell can be seen behind the ATV

The question was how could I use this machine to carry my boat? The shell can be seen behind the ATV

But how would I use it to carry my boat to the lake? Searching on the internet I found a special rack designed to carry canoes, but I knew it could also carry my shell which weighed only 26 lbs. My wife Kathie and I bolted the rack to the ATV.  I then took large straps and hung them down as slings to cradle the shell. The entire set up fit under the shed by inches, but it worked. I had a method for transporting the boat to the lake.

The ATV carrying my shell. Notice the tight fit under the shed roof (but it fit).

The ATV carrying my shell. Notice the tight fit under the shed roof (but it fit).

The million dollar question, would I be able to lift the boat off the ATV and place it in the water?  I drove the ATV into the water to a 1 foot depth. Next I maneuvered off the machine into the water with my flexible knee. If I hyper-extended the knee it locked allowing me to bear weight. I carefully positioned myself next to the ATV, placed my arms under the boat and released the straps. The boat dropped into my arms and I slowly inched my way deeper into the water using side steps and propping myself against the wheel rim. I slid the bow into the water. This took 20 minutes. I was sweating and my arms were fatigued, but I had the boat in the water. Next I took the supporting pontoons and the oars. First I locked the pontoons on the ends of the riggers, and then using the oars as a cane I walked them to the boat, and placed each one in the oar lock. Next I sat in the boat seat and rotated my prosthetic leg into the boat. I slowly rowed the boat through the dense vegetation and after another 20 minutes made it out to the lake.

I was exhausted and only rowed for 10 minutes because I realized I had to save energy to put the boat back on the ATV. I backed the boat onto the shore, removed the oars and slowly dragged the boat toward the ATV. As I stepped my prosthetic leg caught on some underwater weeds and the knee buckled. I fell in the water with the boat on top of me.  Soaked I lifted my self up and again cradled the boat in my arms, being very careful to avoid weeds and other obstructions. After 40 minutes I managed to lift the boat up,  place it in the slings, and place the oars on the rack. Wet, muddy and exhausted I drove the ATV back to the shed where I was able to carefully back the long boat into the constraining shed space without causing any damage.

After rowing the ATV containing the boat had be backed into the small space under the shed.

After rowing the ATV containing the boat had be backed into the small space under the shed.

My first boat launch on my own had been a success, as well as an incredible workout. The entire process had taken over 2 hours. A far cry from the simple way I had launched my boat with two good legs. But then again I had achieved my goal. I knew my technique for launching the boat would improve over time. I also knew this represented a major milestone in my recovery.

The shell and ATV safe and sound after my first row on my own.

The shell and ATV safe and sound after my first row on my own.

March 2013 with the help of my friends I am finally back on the water.

March 2013 with the help of my friends I am finally back on the water.

As I described in my second post “How has my life changed?”, my first trip to the lake was an unhappy experience. I tripped on the grass and strained my back, never reaching the lake’s shore. I returned home discouraged and depressed. So you may have wondered, did I ever return to rowing? The short answer is “Yes!”.

The longer answer is not quite that simple. In early March of 2013 after 6 months of intensive physical therapy and weight training I asked my prosthetist Kyra to design a rowing leg. She created a simple prosthetic knee that could be submerged in the water. The knee was free swinging allowing me to straighten the knee by flexing with my gluteus maximus (large butt muscle). To make sure that I wouldn’t tip over my narrow rowing shell, I  attached pontoons to  the riggers of my boat. The equipment was ready. But could I actually row? I searched for videos on YouTube of AKA rowers, but found only a few who had rowed on ergometers (land-based rowing machines). Was rowing a 2 foot wide rowing shell without one leg even possible?

The big day had arrived. My daughter Ashley drove with me to the lake and she tried to lift the boat and place it on the wagon I had planned to use to wheel the boat to the lake (about 300 yards from the storage shed). The boat, 26 feet in length, was impossible for her to maneuver. She nearly dropped the delicate boat, and my neighbor Buddy rushed over to save her from falling. He lifted the boat onto the wagon and then the three of us wheeled the boat toward the lake. Meanwhile two more neighbors Nancy and Mark came to the rescue.

I realized the shore where I had previously launched my boat was filled with vegetation. Mark lifted the boat and carried it to the sandy beach of our next door neighbor. With crutches I was able to reach the water, wade to the boat and sit on the seat. With Mark’s help I set the oars in the oarlocks, next I swung my rowing leg into the boat, and then strapped the prosthetic foot over the shoe using a Velcro strap. As I tried my first stroke my heart rate jumped, and tears came to my eyes. I was back on the lake! I nervously balanced the boat as I began rowing. The boat glided forward with surprising speed. My friends all cheered as I sped across the lake. I was back on the water!

Rowing with my prosthesis on Lake Santa Fe

Rowing with my prosthesis on Lake Santa Fe

I have been extremely busy now that I am back at work full time, and I haven’t had time to post. Two months ago I attended my first medical conference in Boston and stayed in a downtown hotel. I had been working hard to walk without a cane. On arrival in Boston I realized I had forgotten my medications and I didn’t want to miss my daily aspirin. I checked the directory and learned there was a CVS pharmacy just 0.36 miles away. An easy walk for most people but I realized this would be a major challenge. Hey why not? This would be my first major walk in a busy city. I forgot how bumpy and irregular the sidewalks of downtown Boston were. There are brick walks, stone walks, asphalt walks alternating every block. There are high curbs, pot holes and man holes everywhere. For me this was the equivalent of a cross country steeple chase.

I started off and the first few blocks went smoothly. But as I began to sweat I felt self conscious. Were all the busy commuters looking at me? I tried to appear confident, but the continual inclines and irregularities were frightening. I felt as though I was only one step away from a fall. Should I turn back? This was good for me. I needed to improve my walking and toughen my leg.

I pushed on, pausing to rest my limb every two blocks. As I leaned against each building to rest sweat was coming down my face. It was 70 degrees. No one else was sweating. Did anyone notice? I seemed to blend in and I suspect my fellow pedestrians assumed I was just an old guy out of shape. If they only knew how hard I had been training to improve how I walked. The effort I was expending was at least 30% more than someone with two good legs.

And then came the large intersection. Traffic everywhere. As the walk sign turned green I carefully stepped off the curb. The tar covered road was irregular. I carefully made my way  across the street. As I reached the other side I took a deep breath. I was relieved. I was walking the sidewalks and crossing the streets just like a normal pedestrian.

I arrived at CVS and purchased my aspirin. Now I had to walk all the way back! My leg was slightly painful from the extended pounding on the pavement and the many sudden corrections and increased weight baring as I navigated the irregular terrain. I gulped once and charged forward. The return trip was slightly downhill and I was able to make quicker progress. I stopped only once to cool down.

As I arrived at my hotel I felt a sense of accomplishment. I had completed my first walking errand. I needed a shower. My shirt was soaked through in the back and sweat was pouring down my face. I had completed my morning work out. My Jawbone bracelet counted 1300 steps. I had covered 2/3rds of a mile. Not bad for my first extended walk in a large city.

Soo is on the right holding one of her two children. Her Dad is in the center.

Soo is on the right holding one of her two children. Her Dad is in the center.

Meet Soojin Jun. She wants the world to learn from her Dad’s encounter with our health care system:

A morning walk in a fog reminded me how my Dad would have felt when he was ill. Cold, unclear, and alone…I was there but I couldn’t be there. When it came to death, only my Dad was called, not me.

I would have never known that the medical systems in US killed my Dad if I didn’t go to pharmacy school after my Dad lost his life; he died a week before his flight to S. Korea in an attempt to get better and more affordable care. Here’s the story of my Dad’s healthcare nightmare.

My Dad lost his appetite and couldn’t swallow well. He was diagnosed with esophageal cancer stage III. It was due to his 30+ years of smoking and drinking. The surgeon gave my Dad two choices: chemotherapy or surgery. Both options were presented as comparable options. My Dad chose chemotherapy. In hindsight it probably was a wrong choice, although no one could prove that; however, the option of surgery quickly disappeared when my Dad lost so much weight due to the chemotherapy and his inability to swallow food. By the time we decided he needed surgery, the surgeon told us it was too dangerous now and reprimanded my Dad for not trying to eat enough food and for making a wrong choice. During his 2 month hospitalization he had a G-tube placed and was diagnosed with diabetes. When his insurance refused to pay for additional hospital time, my Dad’s primary doctor suggested moving to the psychiatry ward to extend the hospital stay, and suggested this would be no different than being in a general hospital. My Dad was very unhappy during his 2-day stay and requested discharge. He was then placed in a nursing home.

After a month stay in a nursing home, his insurance again refused to pay for a longer stay because he was able to walk . My Dad didn’t want to burden me and he chose to stay at nursing home at a personal cost of $10,000/month. After a month, I brought my Dad to my home, his bank account depleted. A visiting nurse came once per week to our home. She gave me the list of 20 drugs and instructed me what to give and when. A friend suggested getting the second opinion and introduced us to a doctor at MD Andersen. The doctor told us further treatment would cost at least $40,000 and insurance wouldn’t cover out of state medical costs. My Dad chose not to get the second opinion. He wanted to live and turned to natural foods known to fight cancer, supplements, and acupuncture. He became anxious as he lost more weight and he decided to seek treatment in his home country of S. Korea. He booked a flight and we were all hopeful. We knew a second opinion and comprehensive diagnostics, treatments, and hospitalization would all be cheaper there.

While waiting for his flight, he suffered two episodes of hypoglycemia requiring ER visits, followed by severe abdominal pain that also required that we take him to the ER. As I watched my Dad suffering with severe pain, I realized he was going to die. Even in his pain, he didn’t forget to thank the nurse who injected the painkiller. The nurse placed her hand on my Dad’s forehead and told that he wasn’t in place that expected a thank you, but she seemed grateful that he did say thank you. She was the only healthcare professional who actually cared for my Dad, during this prolonged nightmare. We believe he died of a ruptured esophagus or bowel, but it was never suggested that we request an autopsy. I will never know the exact cause of my Dad’s death

A few months after his death, we received two bills: one from the psychiatry ward (the insurance denied coverage) and one from MD Andersen. We appealed these bills. The physician had insisted on the psychiatry ward charge despite my Dad’s reticence. He suffered those two days on a psychiatry ward for what reason? The hospitalization wasn’t even covered. Despite choosing not to travel to MD Andersen, we were charged a $500 registration fee. We spent months of writing letters, and these letters proved as painful to write as receiving the bills. We would have loved to have used their services, if only we had the money.

As a pharmacy student who now understands health care Soo has a number of concerns and suggestions that could have prevented her Dad’s experience.

Problem: The cultural/language barriers complicated the crucial time of decision-making and my Dad chose chemotherapy. We had no idea that the esophagus could lose reflexes following chemotherapy; and I now realize how wrong that surgeon was in telling my Dad to try to eat. In retrospect surgery probably would have been the best alternative.

Solution: My Dad would have benefited so much more if he had clear explanations of his options and consequences of the options.

Problem: With one exception none of those who treated my Dad seemed to care. And did I mention no follow up, no explanation, and no support was provided during the transitions of his care? If only one healthcare professional took enough time to talk to us and gave us clear idea, he could have lived little longer. All this combined with our mere trust in healthcare led to disaster.

Solution: If that nurse by his ER bedside could have appeared in the beginning or even the middle of his care, a healthcare professional that actually cared for patients with empathy, he might have been here today. Lack of continuity and coordination of care is a major issue for many patients. One caregiver needs to take responsibility for the coordination of each patient’s care. This takes teamwork and communication. If my Dad had been cared for by a true team, who knows, he might be with us today.

Final Comments: I will never forget my Dad’s experience. These memories will live on for the rest of my life, and that is why I will continue to fight for patients because we will all be patients someday, and we all have the right to get the right care. Aren’t you scared that you will be cared for like my Dad? It is the time to stand up together and fight against nonsense, ironic, and paradoxical healthcare in the US.

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