troxel tens foundation

YOU SHOULD BE DEAD

by

Matthew B. Troxel

May 17, 1999

“You should be dead.” If I received a penny each time a doctor or a nurse said those words to me over the last four years, my net worth would exceed the combined fortunes of Bill Gates and Warren Buffett. My computer, with the Intel Pentium 11 Processor, breaks down and sparks with smoke when it tries to calculate what I would be compensated at a penny for each minute a doctor or nurse has wasted my time. Ah yes,… time. The wonderful magic of the financial world where compound interest works to turn money into wealth. Along with ourselves and our possessions, given from the good Lord above, time also represents one of His very precious gifts of love. However, depending upon your own relevant viewpoint, another intriguing characteristic of time we all share, although very few in the Great Society like to discuss, derives from the fact that at the same moment we start to live, we also start to die.

Before grasping to a prejudiced conclusion in terror, take a moment; and try to think about life as we know it in a more surreal way - a way where truth awaits discovery from us all, as an open secret. Try to understand and focus on the idea that during life, we move forward in reverse. Along the journey of life, all of us encounter different people and experiences, which create causes set in motion. Hopefully, each cause provides an opportunity to learn more about the esoteric truths of our own nature, and empowers us to affect the world in which we live. Since April 1, 1995, my doctors told me I began to live on “borrowed” time, or, in other words, I should be dead.

April 1st, April Fool’s Day , represents a day of fun, practical jokes and laughter for most people. Unfortunately, April 1st, 1995 was not such a day for me. Instead, it marked the day when my life changed in both a physical and surrealistic way forever.

My journey began in the Emergency Room at Good Samaritan Hospital in Downers Grove, Illinois. The emergency room doctor called in doctors from other disciplines. Many of them asked me if I used illegal drugs, which I did not. After offending me, the doctors appeared puzzled and thought my symptoms suggested a severe case of measles. In fact, they even contemplated sending me home, but decided to admit me when my fever spiked to 105. The doctors placed me in an isolation room as my condition deteriorated rapidly. The next morning I felt blisters all over my face and breathing became extremely difficult. When the doctors decided to transfer me to the ICU, I knew I had something worse than the measles.

The doctors concluded I contracted an acute form of a very rare, and often fatal, disease known as Toxic Epidermal Necrolysis Syndrome (usually called TENS, even in medicinal vernacular). Due to the life threatening severity of my condition, arrangements were made with Loyola University Medical Center , (LUMC), in Maywood , Illinois , to send their Life Star Helicopter Team to transport me to Loyola ’s Critical Care Bum Unit. The helicopter pilot told my family they would be at Loyola in five minutes and not to try to beat him there. As the helicopter flew away, 36 hours after being told I had measles, my family was told I was in for the fight of my life.

TENS is commonly misdiagnosed. Fortunately, I was diagnosed accurately and transferred to a burn unit. The chances for a patient to survive diminish without an early, correct diagnosis and treatment according to appropriate protocol in a burn unit. During the first 36 hours of my illness, neither my family nor I knew what horror awaited us.

Upon my arrival to the Burn Unit, Dr. Richard Gamelli took control of my care. Dr. Gamelli works for the medical center as the Head of the Burn Unit, Chief of the Department of Surgery, and the Head of the Burn & Shock Trauma Institute. Although Dr. Gamelli and his nurses put me in a drug induced, paralyzed coma for 6 weeks of a 5 month hospitalization, I remained capable of hearing events transpire around me. Each day, my family informed me where I was and reassured me that the best doctors and nurses available were working hard to save my life. Both my mother and father put their complete confidence and trust in Dr. Gamelli.

Dr. Gamelli informed my family that my case was severe and the external burning involved 80% of my body surface. He further stated that the burning was also occurring inside me. I endured dressing changes twice a day to promote heating of my wounds. The external burning ceased after 10 days. Additional life threatening problems began to manifest as a result of the internal burning.

A chest tube was inserted after my right lung collapsed and the ventilator settings were increased to the highest level. I became intolerant of tube feedings for nutrition and unable to maintain important body pressures. My physiological systems continued to decline.

My family was called into the hospital one morning and Dr. Gamelli told them I would not survive another 24 hours unless he found the problem. Dr. Gamelli said to my family, “We don’t like to lose 24 year olds and everyone is pretty broken up.” He continued to assure them everything was being done to save my life. A necrotic bowel was found to be the source of infection. At midnight Dr. Gamelli requested permission to perform surgery. After I was stabilized, follow up surgery occurred resulting in a temporary ileostomy.

Over the last 4 years, I have endured multiple surgeries and procedures to repair the destruction to my body. I came home in August, 1995 unable to eat except through a tube in my stomach because my throat was scarred closed. I underwent three laser surgeries to open my esophagus. I lost all the hearing in my left ear and most of the hearing in my right ear. Nothing will ever sound the same again with the hearing aid. I have permanent nerve damage in my hands and feet. Many months passed before I regained any function in my hands. My feet still feel like they are on fire and constantly asleep. I’ve had several hernia surgeries and the surgery to reverse my ileostomy resulted in the removal of a significant portion of my abdominal wall. I suffer from rheumatoid arthritis, moderate osteoporosis, and compression fractures in two vertebrae as a result of being on prednisone. Due to the damage to my gums, lack of saliva production, and as another consequence of prednisone, I lost all of my teeth. My eyes became extremely light sensitive and eventually I became blind from cornea scarring and growth of blood vessels over the entire surface of my eyes. After several cornea specialists told me I needed to learn how to live blind, Dr. Scheffer C.G. Tseng , a phenomenal cornea specialist in Miami restored my vision. Two surgeries in each eye required an amniotic tissue graft and a stem cell transplant. Dr. Tseng is not only a highly skilled surgeon, he directs leading edge research and technology on cornea restoration and is a kind and caring person.

Prior to acquiring TENS, my lungs suffered from chronic asthma. The syndrome severely attacked the weakest part of my body and I have been diagnosed with pulmonary fibrosis. I am now a candidate for a bilateral lung transplant and have been on the list for over a year. The pulmonary doctors told me that without a double lung transplant. I would not survive more than 1 to 2 years.

When I finally met Dr. Gamelli, I knew that without his expertise, knowledge and care, I would indeed, be dead. Dr. Gamelli often reminds me as a personality synthesis of the characters played by Robert Duvall in Apocalypse Now, George C. Scott in Patton, and Indiana University’s basketball coach, Bob Knight, because of his tenacity and absolute unwillingness to lose. However, what tempers and sets Dr. Gamelli apart from the three other leaders I used to describe him are, his wry sense of humor, his almost compulsive streak of honesty, and his ability to deliver very unfortunate diagnoses to patients’ families with gentle compassion.

Some may claim that doctors can learn and teach others how to deliver bad news to patients’ families with class, style, poise, and grace as they gain experience. My own particular situation and siege over the last four years argues against such a notion. I believe God either grants the gift of a good bedside manner, or He does not.

Essentially, what makes doctors and nurses extraordinary people, and differentiates them not only among their own peers, but also from all other noble professions in the Great Society, comes from the fact that their work involves fighting the oldest and mightiest opponent known to humankind from time immemorial, death. In fact, the last time I checked, only Jesus Christ actually defeated and conquered death. Strangely enough, in order for Christ to accomplish and claim His victory, He suffered and died for the entire human race, WITHOUT ANY ANESTHESIA!!! (Pretty nice fellow that Jesus, even if He doesn’t follow traditional protocol)

The best advice I can offer anyone is, DO NOT GET SICK! All of us will become sick at one time or another. Once the hospitalization occurs, we want to look to doctors and nurses as anointed super people. We no longer consider a hospital merely a place where Joe and Judy Paycheck practice medicine in funny clothes they do not wear at home. Instead, we consider a hospital as some sort of a special spiritual vortex, connected to the Almighty, Who gave all of the doctors and nurses the right answers to all of life’s scariest questions, especially the haunting, “Will he live?” because, after all, they went to medical school!!!

For the amount of stress, energy, hurt, anguish, and pain involved in any trauma situation, when an honest doctor who tries to answer the haunting question and says, “I don’t know” to a scared family, his response just won’t suffice. If the doctor gives the wrong answer, follows the wrong protocol, and the patient dies, ambulance chasing lawyers arrive on the scene before the deceased’s body can turn cold, or before the transport team can tag and take the body to the morgue.

When doctors and nurses make mistakes, as all human beings do from time to time, both inconsequential and catastrophic, they often make matters worse through omission, being disingenuous, or attempting to justify the unjustifiable. Many doctors and nurses fail to understand the psychological impact and ramifications their statements make on a patient and the family.

Since the beginning of my journey I encountered and experienced medical professionals at various levels of expertise and dedication. Unfortunately, our society does not recognize nor reward very special and gifted doctors in the same way we reward star athletes who play games or entertainers who sing or act. Many of us will pay any price for tickets to a musical event or sporting contest, but somehow find it very easy to scream and shout about the cost of medical care. Unfortunately, society continues to undervalue the expertise and skills required to save and care for the sick. Doctors and hospitals have to answer to cost containment institutions. Sadly, the politically correct way of “right sizing” has invaded the health care arena at the expense of the patient.

While I can understand that doctors become cynical, detached and frustrated with the health care system they serve as a bottomless pit of thankless need, many patients come to appreciate the beautiful gift of life more than the doctors can ever imagine. The amount of pain and suffering endured by patients provide them with a unique insight into the surrealistic redemptive qualities of life. When these patients, myself included, will do anything humanly possible that a doctor asks them to do in an attempt to restore whatever their particular illness stole from the quality of their lives, all too often these patients receive the same cynical attitude worthy of the ambulance chasing lawyers. Doctors do themselves an enormous disservice when they behave in such a manner.

Even after I survived the unsurvivable and continue to try to recover the unrecoverable loss that Toxic Epidermal Necrolysis Syndrome has taken from me, almost every time I encounter new doctors, they always throw out the disclaimer, “You should be dead.” Doctors use this disclaimer to hide behind the traditional protocol soapbox. Therefore, they will only treat whatever symptoms I display according to what traditional medicine says to do, rather than take the risk of treating me outside of protocol because of liability. If my body does not respond to the protocol of traditional treatment, the doctor can say he did what traditional medicine requires, and I cannot hold him accountable.

Doctors who treat patients in such a manner will someday become care recipients rather than care providers. As a lung transplant candidate, I most likely won’t see that day come for many of them. However, I would love to be a fly on the wall and see the expression on their face when a doctor says to them, “You should be dead,” and proceeds to follow traditional protocol.

Organ transplant candidates face a unique situation because an infinite need exists for a finite amount of organs. I became an organ transplant candidate because of a syndrome that medical professionals never hesitate to remind me should have sent me to my grave. They added further insult to my posttraumatic tortured hell that I endure and continue to endure every single day when they asked me to convince them of my desire to live in order to be accepted in the program and put on “the list” of life. I find such a request to be completely and utterly offensive. My mind and my spirit have more resolve, love and respect for the precious gift of life than any of them will ever truly know.

After being told my syndrome complications and medications made me too high risk for transplantation, I asked what I needed to do to reduce the risks and become a “good risk” candidate for surgery. All surgeons will say there are no guarantees in surgery, only risk. I know I will achieve the status of a good risk for transplant surgery. I want to achieve this goal not only for my survival, my self-esteem, my family who loves me, but also because I will not allow the hard work of the last four years to become a vain waste of time. Even if I perish, I win because I will return to the Kingdom of Jesus Christ. If I become a successful transplanted organ recipient, maybe Warren Buffett and Bill Gates can figure out how to do financial calculations for people living on borrowed time and sell them as part of Microsoft’s Y2K software package. If they don’t, that’s okay with me. After all, I should be dead.