Archives for category: treatment plan
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.

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