Archives for category: resilience
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

Marty and Gwen  Survivors

Marty and Gwen Survivors

Meet Marty and Gwen

Marty is a master carpenter who for years molded wood into the most magnificent heirloom furniture imaginable. He had a thriving architectural woodworking business and was always in demand. Gwen worked as a fund raiser and health policy advocate for a university health system.

In 2001, as Marty was turning 50, he was examined because he had some blood in his stool.  During his colonoscopy a polyp was found near the rectum and was removed.  In retrospect the polyp base had not been completely removed. He was told the polyp had cancer cells, but he was never scheduled for a follow-up colonoscopy. In the following seven years no one in whose care he was under ever recommended that he be seen every year.

In September 2005 Marty complained to his primary care physician that he had noticed blood in the rectal area. He was examined and told this was due to a hemorrhoid. Again in 2006 he noted blood on the toilet paper, and again he was told it was caused by a hemorrhoid. He trusted his physician, after all it was “not his place to question or quibble”. In mid-2007 he called the physician’s office complaining of globs of blood from the rectum and again was told it was just his hemorrhoid.

In July 2008 he was diagnosed with a malignant neoplasm of the rectum, stage IV cancer, meaning the cancer had spread to his lymph nodes. Marty was devastated. He had trusted his physicians. But he soon learned that he had not received the standard of care he deserved. Rectal bleeding should have been taken more seriously. An entire academic health center had failed him.

He was told by the first surgeon he saw that he had the worst colon cancer she had ever seen, and that he would be required to wear a colostomy bag for the remainder of his life. She demonstrated no empathy for his situation. Discouraged Marty thought about giving up, but Gwen would have not part of surrender. Through her connections they identified an outstanding surgeon, oncologist and radiation therapist. After extensive surgery,  high dose chemotherapy that resulted in the loss of sensation in Marty’s hands and feet, as well as extensive radiation that resulted in delayed wound healing requiring 14 months of dressing changes, Marty recovered. He is now cancer free.

Marty could have sat at home angry and depressed over what had happened to him. However, having grown up in the 60’s he remembered the words of Bob Dylan’s song The Times They Are-A Changing:  “Shake your windows. And rattle your walls”. And that is exactly what Marty has done. He met the the Chancellor of the Medical Center that had failed him in the hopes of preventing similar events from happening to others. He has spoken to healthcare providers (strike on this link to watch his eloquent presentation) describing in vivid detail both the worst and the best that our health systems have to offer.

Marty wants to be a force for change, and I hope that you will join Marty and me in our quest to reduce errors in our health care systems. The sharing of our stories can and will make a difference.

Lessons learned from Marty’s and Gwen’s experience:

  1. Problem – Marty was not provided with proper follow up instructions after his 2001 colonoscopy.
    Solution – All colonoscopy reports should include recommendations for follow up. In Marty’s case a colonoscopy should have been recommended within 3 years or earlier if he experienced rectal area pain, bleeding or anemia.
  2. Problem – His primary care physician ignored his complaints about rectal bleeding. She attributed blood on his toilet paper to a hemorrhoid, which she misdiagnosed. She made a common reasoning mistake. Her diagnosis became anchored and she was unwilling to change her diagnosis despite additional input from Marty. She failed to listen to the concerns of her patient.
    Solution – All physicians  must be aware and guard against anchoring their diagnoses. An expert diagnostician keeps an open mind, takes in new information, and changes his or her leading diagnosis accordingly. All clinicians should also consider the worst case scenario, and exclude the most dangerous diseases that could harm their patients.
  3. Problem – When Marty presented his complaints to the Chancellor of the Medical Center, the administration and physicians circled the wagons. They never apologized and claimed Marty’s illness was a complication that could not have been prevented. This forced Marty to take legal action increasing the settlement costs to the medical center and causing great emotional stress to Marty and Gwen.
    Solution – When an error occurs the caregiver and medical center administration should immediately acknowledge their error and sincerely apologize, describe the ways they will prevent similar errors from hurting patients in the future, and offer a fair monetary settlement for the harm they have caused.
Kathie and Fred at Kathie's Birthday party 11 months before the loss of Fred's leg.

Kathie and Fred at Kathie’s Birthday party 11 months before the loss of Fred’s leg.

After my friends experienced the initial shock and disbelief about the loss of my leg, as should be expected, they have gone back to their lives and their routines. Out of sight truly does result in out of mind.

Who is left to help pick up the fragments of my life? my wife Kathie.

Kathie is the one who had to place clean sheets on the couch because the cushions were too rough to lie on all day.

Kathie is the one who figured out I could attach my bladder catheter bag to a hanger placed under the couch cushion. She was the one who had to empty the urine four times per day.

It was Kathie who changed the dressing of my amputated leg. She wore sterile gloves and carefully placed the gauze along the incision to trap any drainage. She admits this was very hard, and after she removed her rubber gloves her hands were sweaty as a consequence of the stress associated with cleaning my wounds.

Kathie had to sleep in the guest room because I could only sleep one hour at a time because of the pain. My tossing, turning and intermittent subconscious groans made it impossible for her to sleep. We had our cell phones so that I could call if I had an emergency.

When my ace bandages, carefully wrapped in a figure-8 pattern to prevent residual limb swelling, slipped off in the middle of the night, it was Kathie who helped me re-wrap them.

I will never forget my 3 AM call in panic. I had tried to wheel to the bathroom and the lines of my pain pump got wrapped around the wheel of my walker. I tried to untwist the lines, but they were hopelessly tangled. I lay down on the floor and called. Kathie arrived rubbing her eyes, but with a gentle touch and a concerned expression she worked for 15 minutes before the lines were free. We laughed and cried with relief. We were both exhausted the next day.

For the first three months it was Kathie that had to bring my coffee and my meals, because I simply couldn’t do it myself. She patiently fulfilled my every request.

Did you ever try to carry coffee using a walker? The coffee spills all over the floor. I tried to carry a slice of pie to the couch using the walker, and guess where it ended up? upside-down on the floor.  Finally I figured out a routine. When Kathie isn’t home I eat all meals at our kitchen counter near the microwave and refrigerator. I can move plates and cups from counter to counter using my arms and avoiding using the walker. If I want to drink coffee on the couch, I now place the cup on the kitchen counter as close as possible to the couch coffee table. I wheel around to that side of the counter positioning my walker between the counter and the coffee table, and with a steady smooth movement of my arm and hand transport the cup from the counter to the coffee table. I then wheel to the couch, sit down and reach over to the end of the coffee table for my coffee. Drinking a cup of coffee on the couch used to be so simple, now it is a complex orchestrated operation.

Losing a leg is not a solo sport. I have realized it takes a team, and Kathie is my team. As I kidded with her last night, without her I would be F**ed (we thought people would think this is funny, but it’s true!).  Kathie has never complained. She cares so very much. As the plaque she has placed on our wall says “Most of all let love guide your life.” And Kathie follows the path of love every day.

Thank you my Kathie; without you my life without a leg would be unbearable.

When I awoke after the first surgery to repair my arteries, my wife Kathie and I were greeted with bad news. The vascular surgeon could find no patent vessels below my left knee for bypass surgery. He shrugged his shoulders and with sadness told us he could not fix my problem. As Kathie lovingly squeezed my hand she began to cry. I was stunned. Kathie asked, “So what does that mean?”  Our surgeon replied “That’s a good question.” He left it up to us to conclude that I was going to lose my leg. The news was overwhelming. But I was grateful to have my beautiful and loving wife by my side. Together I knew we would get through this.

Two weeks later I underwent a below the knee amputation. The next day as I slept in a chair my brother, Steve, came into my hospital room and saw my amputated leg. He too cried. Our entire childhood the Southwick brothers were the champion touch football players of our neighborhood. We had running and passing plays known only to us that always overcame the opposition. There would be no more touch football games. When I awoke he lovingly comforted me.

My daughter, Ashley and son Peter, arrived and were in disbelief. How could their invincible father have suffered this fate? They cried and hugged me. We had jogged together training for the cross country and soccer teams; we had mountain biked in the North Carolina mountains, we had surfed on Florida’s beaches; and we had skied the  Colorado slopes. Would their Dad ever be able to do these things with them again?

Another two weeks passed, and Kathie and I knew something was wrong. The material coming from my incision looked like current jelly. The margins appeared black and ominous. We saw our vascular surgeon who frowned. “I am sorry the leg below your knee has died. We need to perform an above the knee amputation.” “Damn, damn, damn” I yelled. This meant I would lose far more function. No knee or quadriceps muscle for rowing or biking. Kathie hugged me and cried. Three days later I underwent a second amputation. I felt like I had lost the battle.

Once I returned home all I could do was sit on the couch and shuffle for short distances using a walker. But Kathie lovingly attended to my every need. Steve visited for a week and helped out. Friends brought meals and lent their emotional support. My Mom and Dad wanted to drive to Florida to see me. They wanted so much to be with their little boy, but at 89 years old they were too frail to travel. We set up Face Time and we saw each other every day. The love of my wife, my brother, my parents, my children, and my friends gave me strength. I knew I had to overcome my loss for them, as well as for me.