Archives for category: emotonal support
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

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.

Campaign Time Line Horizontal axis = time Vertical axis = campaign

Campaign Time Line
Horizontal axis = time
Vertical axis = campaign

As compared to Samuel Adams where are we in our campaign? Individuals have created service organizations that have provided support and contributing solutions. These organizations have been created by single individuals and then expanded. They have taken effective steps to support patients and families injured by medical errors. They have documented the types of medical errors, provided counseling, as well as advice on how to avoid being injured. They have created programs that allow patients and patient families to educate caregivers on how to improve the safety and quality of their care. Members of these organizations have attended the meetings of national healthcare safety and quality organizations and discussed their personal experiences in medical centers throughout the country. These efforts continue to bare fruit; however as the many comments of the over 1600 patients on the Probpublica patient harm facebook site reveal,  patients continue to be injured, and the majority are angry and distrustful of our health care systems. How can we advance our campaign to reduce medical harm and improve how patients injured in our health systems are treated?  A group of very involved patients and families who have suffered the consequences of medical harm now propose a national organization created by and for injured patients and patient families. We are working together as the outreach initiative within the Empowered Patient Coalition.  The goals of our organization are in evolution; however, one of our first actions will be to hold a national meeting exclusively about and for those who have been injured in our health care systems. As our campaign progress diagram shows we have a long way to go, but thanks to the work of those who have gone before us we have an excellent foundation.

We have a supermarket chain in Florida called Publix. George Jenkins founded this remarkable company in 1930 at Winter Park, Florida. The success of his company has always been based on customer service. As he told his employees at the end of each orientation, “If there is ever a customer you can’t handle, give them my phone number, because I will.”

Publix has a guarantee posted in every store that reads:

“Publix guarantees that we will never knowingly disappoint you. If for any reason your purchase does not give you complete satisfaction, the full purchase price will be cheerfully refunded immediately upon request. We have always believed that no sale is complete until the meal is eaten and enjoyed.”

Publix has been rated by Fortune Magazine as one of the top ten best companies to work for (2005–2008) and is one of Forbes Magazine’s top ten largest private companies (2009). Publix consistently scores higher than any other supermarket for customer satisfaction based on the national American Customer Satisfaction Index survey (1995–2010). (See Critically Ill: A 5-point plan to cure health care delivery)

Publix attributes its success to a continual focus on its customers. The key question arises, if Publix supermarkets can guarantee their food after it leaves the store shouldn’t our health care systems be willing to guarantee the care they provide to their patients after they leave the hospital or clinic? Stories like those of Jess, Carla, Marty, Veronica, and Georjean, would never have to be told. Imagine if each time a medical error occurred, the caregiver and health system immediately informed the patient, deeply and sincerely apologized, explained how the health system was taking steps to prevent the same error from harming others, and then fairly compensated the patient.  Patients injured by medical errors would no longer feel as though they were being ostracized. They would no longer lose their trust in our medical system. They would no longer be suffering the financial hardship brought on by their injuries. After all, these injuries were not the fault of the patient. Why have the very institutions whose charge is to help those in need turned their backs on the patients who morally and ethically most deserve their help? When our health systems and caregivers make mistakes, shouldn’t they do everything in their power to help those they have injured?

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.