Archives for category: amputee

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 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.

John kissing his beloved daughter Kate

John kissing his beloved daughter Kate

Kate with Julia and John at her side. She is holding her first place trophy after winning her school's speech contest.

Kate with Julia and John at her side. She is holding her first place trophy after winning her school’s speech contest.

John and Julia Hallisy’s daughter Kate was first diagnosed with retinoblastoma of both eyes at the age of 5 months. She required 2 years of aggressive chemotherapy and radiation, as well as removal of her right eye. She appeared to be cancer free until age 8 when she developed severe pain in her right upper thigh. She quickly underwent a biopsy that confirmed the worst, she had a second tumor, osteosarcoma, a bone tumor that can on occasion accompany retinoblastoma.

Her surgeon planned to resect the tumor and leave sufficient bone to allow her to have a functioning leg. However, a preventable postoperative infection got in the way. Within 48 hours of her biopsy, Kate became hypotensive due to Staphyloccocus aureus sepsis resulting in respiratory and kidney failure. She underwent an incision and drainage of the infected biopsy site, received prolonged intravenous antibiotics, required ventilator support, and remained in the intensive care unit for 7 weeks.  Painful bedsores also complicated her hospitalization.

The delay in treatment of her osteosarcoma resulted in continued growth of the tumor. As a consequence her leg had to be amputated above the knee two weeks after her discharge from the ICU. Kate’s parents were devastated, but John insisted, “We’re not going to mourn for her while she is still alive. We’ll have the rest of our lives for that. Our job is to make the most of every minute we do have.”

Kate’s last 19 months of life were extremely hard. Kate suffered from severe phantom limb pain, a well-known complication of amputation. The damage to her lungs during her septic episode reduced her ventilatory function to 70% of normal leaving her breathless when she tried to walk with her heavy prosthesis. She experienced severe post-traumatic stress from her intensive care experience frequently awaking after a nightmare or after wetting her bed. Through all her suffering Kate maintained a positive spirit and tried to look at the bright side of her predicament. After the loss of her leg she told her parents “You know, I will be able to walk again with a prosthetic leg. Some people lose both legs or a leg and an arm. I have it easier than they do.”

Julia and John will never forget their courageous and beautiful daughter. Following her daughter’s death Julia has been working as a patient advocate keeping Kate’s memory alive. Through her advocacy organization The Empowered Patient Coalition http://www.empoweredpatientcoalition.org she has reached out to other patients harmed by medical errors, and has documented over 500 hundred stories of pain and suffering.

Problem: Kate suffered a preventable Staphylococcus aureus infection following a “routine” biopsy that resulted in septic shock, respiratory and renal failure. The delays required to treat this infection prevented limb sparing surgery and necessitated an above the knee amputation.

Solution: It is likely that the skin overlying Kate’s biopsy site was not properly washed to remove surface Staphylococcus aureus. Prior to any invasive procedure the operative area should be thoroughly cleaned with Chlorhexidine. It is also possible that the biopsy instrument was contaminated with S. aureus and reliable procedures must be in place to assure that all surgical instruments are thoroughly heat sterilized.

Byron Dyce, my fitness trainer, brought me back.

Byron Dyce, my fitness trainer, brought me back.

I will never forget the kind expression and deep concern of my vascular surgeon as he explained that I would require an above the knee amputation. He had reviewed every alternative and had considered radical surgical approaches; however the angiography of leg revealed no blood flow below the knee. An above the knee amputation was the only solution.

In preparation for my surgery the anesthesiologist and pain specialist explained the advantages of placing local catheters along my sciatic and femoral nerves and infusing a numbing agent. He was excited and enthusiastic about reducing my postoperative pain, and I agreed to have a local block. Immediately following surgery I was able to control my pain by changing the infusion rate of the local anesthetic. Because I was able to control my pain locally, I required no systemic narcotics which are notoriously addictive, and often cause nausea, sleepiness, and severe constipation not to mention respiratory arrest at high doses.  The pain team came by each day to make sure my pump was working properly. I was and am impressed by their dedication to preventing pain, and their very caring approach. To me they rank up there with the saints. Thanks to their home infusion program I was able to be discharged 24 hours after my amputation.

Because my pain was so well controlled within 12 hours of my  amputation, two physical therapist were able to teach me how to walk using a walker. I was able to ambulate over 200 feet on my first try. They also quickly trained me how to transfer from bed to chair, and balance on one leg. Their encouragement and positive attitude showered me with hope that I would be able lead a normal life without my leg.

During my three hospital stays my nurses fulfilled my every request and continually expressed their concern for my well being. I will never forget one of my nurse’s description of her fight to defend one of her patients from abuse at a chronic nursing care facility. She lost her job trying to do her best for her patient. I knew I was in great hands.  My nurses were like air; they were always around, always hovering. I deeply admire their dedication to the well-being of all patients.

Upon leaving the hospital I was transferred to the care of an outpatient physical therapy team. They massaged my swollen residual limb, taught me strength exercises to build by gluteus muscles and to stretch my contracted ileopsoas muscle. As my strength improved I was finally able to wear a prosthetic limb. They coached me on how to walk. I felt like an infant, as I awkwardly took my first few steps. With each session my gait has improved. I am learning how to keep my hips parallel and drive off my toe by contracting my gluteus muscles. The closest analogy to walking with a prosthesis is cross-country skiing. My goal is to become an expert at my new sport (walking), and I have the best coaches an athlete could ever hope for. Their enthusiasm and positive attitudes are infectious, and their dedication to improving my life inspiring.

I have learned from other amputees that the most critical person in their lives is their prosthetist. If the prosthetic limb does not fit properly walking is a painful ordeal and life becomes very limited. The ideal prosthetist is patient and understanding, and continually adjusts the limb socket to assure the amputee is comfortable, and that is exactly what my prosthetists have done. Whenever I call with a problem, they  respond immediately. They placed padding at sore spots, raised the height of my prosthesis, adjusted the resistance setting of my electronic knee, and continually offered sympathy and encouragement. What an important role they have played in my life and in the lives of others who have lost a limb. My lost limb now plays a very central role in my life. If I am unable to walk or have pain in my residual limb my whole day is ruined. A black cloud hovers over me, but through their careful adjustments, my prosthetists are able to quickly lift that cloud and create a sunny day.

After four surgeries and my prolonged illness I lost over 14 pounds. I was mere shell of my former self.  I decided I needed strength training. However, when I tried to lift weights in the gym, I was unable to pick up the dumbbells and position myself on a bench using my walker. I needed a trainer. And fortunately I found the ideal trainer. Young, powerful and very athletic, this former University of Florida football player took on the challenge of bringing me back. The first few sessions I was fragile and demonstrated minimal endurance. During our third session I fainted. My limb pain combined with my tendency to hold my breath while lifting caused me to black out. Patiently he lay me down and gave me fluids. I quickly recovered. Twice a week at 6 AM I work with my trainer who has created a rigorous one hour program designed to improve my flexibility and strength: shoulder stretches, prone back extensions, forward planks, reverse planks, rope pulls, dumbbells, weight machines, push ups, pull ups, and dips. Each week I grow stronger, and I have regained my weight thanks to the patient and concerted efforts of my trainer.

When friends and colleagues greet me today they frequent say “Fred, you look so healthy. I can’t believe how well you look.” And I realize my recovery was only possible because of the dedicated efforts of my incredible healthcare team at UF&Shands, Hanger Clinic, and Gainesville Health and Fitness. I will always be grateful. When I add up all my teammates I count over 50 caregivers*. It takes a team to pick up the pieces. Putting me back together after my preventable injury has represented a herculean effort.

THANK YOU!

*My Team
1      me**
4      vascular surgeons
6      resident physicians
2      urologists
6      anesthesiologists
15     nurses
4      in hospital physical therapists
6     outpatient physical therapists
2     dieticians
4     blood drawers
3     house maintenance people
2     prosthetists
1     fitness trainer
56   Total team members
**It is critical that each patient become an active member of his/her team