Running the Gauntlet
The Will and Struggle
To Survive
by
Thomas Allen
Foreword
“Who looks outside, dreams;
And who looks inside, awakes.” - Carl Jung
In May of 1973, at age 22, while completing my final two weeks of undergraduate study, I began to experience a number of symptoms (loss of weight, dry mouth and thirst, nausea, frequent urination, loss of appetite and taste, and fatigue) which led me to the Student Medical Clinic. Upon examination, my blood sugar was 700. I was rushed via emergency medical services to the local hospital. I was diagnosed with Diabetes Mellitus Type I. This would be the beginning of a long thirty-four year journey best described as a meandering road of great joys and extremely difficult struggles to survive and lead a full life despite the devastating impact of this dreaded disease.
My story not only consists of this journey and the physical effects caused by this disease, but of the spiritual, emotional and psychological impact upon me and those that have been central players in my life. My primary purpose in relating this story is to provide other survivors (and their families and loved ones), who have unfortunately been stricken with this disease, the inspiration and motivation to “stay the course” and endure, regardless of the obstacles and setbacks they may encounter in this battle. Although there is ample information available concerning the science and advances being made to find a cure for this disease, it is my hope that upon hearing my account of my journey, it may serve to provide insight into one’s thoughts, feelings, and efforts to deal positively with living with this disease. The medical techniques now available to address diabetic complications have changed drastically as compared to what was known during my early stages. This is the same for organ transplantation.
A secondary purpose which has been extremely significant for me is to motivate others to donate their time, efforts, money, and even themselves literally (as potential organ donors), to assist those combating this dreaded disease in their efforts to find advances in medical research until a cure is found. Contributions to the American Diabetes Association, the American Kidney Foundation, and the Gift of Life Donor Program are greatly needed in this fight. In addition, many people are unaware of the tremendous need to support organ transplantation services and programs. Diabetes is a horrible, deteriorating disease that slowly tears at the very fabric of the human body. This disease destroys multiple systems which is why there exists a terrific need for organ donations (corneas, kidneys, pancreases, liver, heart etc.). Whether it is eyesight deterioration (leading to blindness), kidney and/or pancreas failure, coronary artery disease, circulatory disease (often leading to gangrenous conditions requiring amputation) or neurological disease, organ donation is critically needed. I have watched the list of people seeking transplants grow larger and larger and the demand to meet their wishes diminish in comparison. There are simply insufficient numbers of organs available for transplantation. Until a cure can be found, people like me have relied on the kindness of others for survival from the deleterious effects of this disease. It was through such kindness and understanding of loving parents of a young son’s multiple organs that I was able to continue to live. My decision to participate in organ transplantation was based on the fact that it was literally my last resort, without the donor’s organs, my life would have ended quickly. Although the knowledge about organ transplantation was in its infancy, and the outcome unknown, I had decided to explore a dual transplant to contribute to the database to assist others who may decide to do the same in the future. Approximately 14 years ago, I received this young boy’s pancreas and kidney. His gift was truly the miracle that would provide me the opportunity to continue on for these past 14 years.
The chronology of events is the basis for an upcoming book I am writing. As I stated earlier, my story describes the physical, spiritual, emotional and psychological effects caused by this disease. This upcoming book is dedicated to this young boy and his parents, without whose gifts, life would have ceased for me many years ago. Any profits received from the sales of this book are to be distributed equally to the foundations listed above.
Introduction
I once was told that diabetes is a “secret killer”. Long before my diagnosis in 1973, diabetes was at work without my knowledge. Not until my first known complication in 1990 and my need for quadruple bypass surgery, did I become aware of the damage that has been ongoing for a number of years within my body… the destruction of my kidneys and pancreas, the progression of coronary disease, the neurological and circulatory dysfunction (e.g., loss of sensation in my feet, the digestive difficulties within the gastrointestinal tract, etc.) and the dramatic damage within my eyes resulting in bleeding and rupturing.
A few years after being diagnosed with diabetes, my kidneys failed. This, of course, led to renal dialysis; which I began 3 times per week. I was receiving dialysis treatment, via a fistula (otherwise known as a “shunt”) in my left arm. Another setback was how the disease affected my eyes. Perhaps the most frightening impact of this disease early on was the thoughts of going blind. The impact on my eyes was dramatic; resulting in blindness in my left eye and distorted vision in my right. Given the amount of laser treatment done to my eyes, I now view the world through a haze of “fog”. Shortly thereafter, I experienced an optic nerve stroke in my remaining eye. In 1993, I had to undergo surgery for a detached retina in my right eye as well; if I did not take swift action, the sight in my right eye would also be lost, and I would have become totally blind. All of these debilitating concerns, and much more severe, life-threatening issues, were occurring before I would become a double organ (pancreas and kidney) transplant recipient.
I had been seeing dermatologists regularly for skin lesions when I had my first basal cancer episode in 1995. This was followed by a failed angioplasty attempt to clear a graft that was 99% occluded, which resulted in my suffering what is referred to as a “controlled” heart attack; an event that would later indicate more heart damage than originally believed. Months later, cataract surgery was required on my right eye. Additional investigations indicated that the carotid arteries, which feed the brain with blood and oxygen, were partially clogged.
By 1997, I was experiencing digestive discomfort which resulted in having my gall bladder removed. At this time, it was also revealed that I was having further peripheral artery disease. Again in 1997, an angiogram was performed.
In 2002, I required another angiogram due to increased discomfort in my chest. The angiogram revealed that there was significant diminishment of blood flow being pumped, but it was determined at that time that no further immediate action should be taken. Additionally, coinciding with long term use of Prednisone, my bone density was faltering; to rebuild the bone structure, it was necessary to add more medications to the ever-increasing myriad of medications I was being administered. Throughout this journey, medications were either discontinued or replaced by different ones. Today, I am currently taking many as well. (Appendix 2 displays the number of medications I currently take.)
By 2005, I had reoccurrences of basal cell cancer. Each occurrence required additional procedures, at times requiring skin grafts. By this time, I was experiencing more heart problems. On one occasion, at a local fitness center, I experienced a 2-minute “black out” period which led to admittance to the cardiac floor at a local hospital. An angiogram was performed and it showed a graft that was 79% occluded. Angioplasty was performed. Since I also had an irregular heart rhythm, it was determined that the insertion of a pacemaker and defibrillator was necessary. During the preparation for the placement of the pacemaker and defibrillator, the wrong medication was administered and I went into cardiac arrest. Fortunately, I was revived by electric shock in time and brought to the cardiac catheterization lab to see if the recent angioplasty failed. It was successful and the surgery for the placement of the pacemaker and defibrillator was rescheduled for the beginning of the next week.
Following these recent surgeries and changes in medications, I was experiencing pre-syncope conditions. I was also experiencing a number of onsets of an extremely painful condition which would later be diagnosed as “gout”. Again, basal cell cancer reappeared. This time, in 2 areas of my face; surgery successfully removed the cancerous cells. During one of the checkups to examine the functioning of my pacemaker and defibulator, it was discovered there was a significant difference in rhythm between the upper and lower heart chambers. In January 2006, I was admitted to the hospital and underwent a serious surgical procedure known as cardiac ablation. This was necessary to stop the leakage of blood into the chambers of the heart. Due to the location of the arrhythmia in the left atrium, the surgery took approximately six hours and required more detailed procedures.
In Feb 2006, I continued to take diagnostic tests to determine the cause of my reoccurring dizziness. This dizziness was becoming a daily event, often reoccurring numerous times during the day. I attended two different physical therapists as well as 4 chiropractor sessions. Audio tests were performed twice during this time, as well as a brain scan and a table-tilt test. Since no relief from the dizziness was occurring, and no diagnostic causes identified, I began a serious inquiry about the numerous medications I was taking. After a number of discussions with many physicians, pharmacists and other professionals, a change in medications occurred. Only then, did I experience a significant change in the dizziness I had been feeling for the past months. Also, new anti-rejection drugs were ordered to help alleviate the skin lesions and lower the frequency in gout attacks. (Unfortunately, skin lesions continued and gout became more frequent.)
Early in 2007, I began experiencing many of the similar symptoms that I had previously experienced in 1973 when I was first diagnosed with diabetes. Although I had never experienced a kidney or pancreas rejection, I became suspicious that the transplanted pancreas was failing. In Feb 2007, it was confirmed that there was a significant loss in pancreatic functioning. I have now some 34 years later, after numerous procedures, medications and challenges to survive, once again find myself an insulin-dependent diabetic. With bone infection in one of my left toes, amputation is forthcoming.
The following story is my journey over these 34 years. This is not only a story of my physical ailments, but more importantly, a story of the psychological, emotional and spiritual challenges that I have faced on this journey to survive and live with diabetes.
Epilogue
My journey has taken me through physical, psychological and spiritual experiences I never could have imagined. Yet I have been very fortunate to pursue my interests, have an enriched life and now write and share my journey as a “diabetic to transplantation to transplant-diabetic” individual. It is an irrefutable fact that none of this would have been possible had it not been for the tremendous efforts put forth on my behalf by the dedicated physicians, nurses and other professionals in the medical profession. I am also indebted to those professionals who have tirelessly worked in the field of research and education for the advancements made in this arena. Finally, I am among the fortunate who has had insurance coverage for the many interventions that have occurred to me over the past 30 years. Without this coverage, I could never have overcome the insurmountable financial burden that was associated with this struggle. The issue of insurability, fiscal responsibility and risk must now be seriously addressed. Continued political dialogue and creative initiatives have failed. The time for a dramatic, significant overhaul of our broken health care delivery system on the part of our elected officials, both at the state and the federal levels, is demanded. Our health care delivery system is at the precipice. Proposals by progressive leaders in approximately 26 states such as Massachusetts and California are leading the way. As health care industry costs escalate ever forward and are projected to comprise 25% of our nations GNP, the time for dramatic and significant alternatives to our health care delivery system has arrived. Access to adequate health care is not a privilege, it is a basic human right and it is my opinion that the time for universal health coverage for all of our citizens is now.
As in all chronic disease management, personal responsibility is one, if not the most, important concerns for successfully coping with the disease. Although there are many people who are unaware of their diabetic condition (estimates are as high as 20 million individuals), it becomes the personal responsibility of the individual to know their family’s genetic history and any predispositions that may exist. It is vital to their successful management to remain informed and educated on current research and developments. Absolutely imperative is that they maintain a healthy lifestyle, consisting of a prescribed, balanced diet and a regular exercise program. Critical factors in their successful management are their compliance with consistently taking blood tests, monitoring blood sugar levels, and strictly adhering to their doctor’s advice. And it is imperative that one regularly visits their physicians for monitoring the status and/or progression of their disease, Since diabetes affects major organs and multiple systems, numerous specialties are involved and play a vital role in the management of diabetes, among which are ophthalmologists, optometrists, cardiologists, neurologists, nephrologists, gastroenterologists, endocrinologists, vascular surgeons, podiatrists, and otorhinolaryngologists.
Be aware of the multitude of medications you may be taking. All have varying degrees of side effects and/or adverse drug interactions which may pose a very complex situation. Not all adverse interactions are listed in the database that physicians and pharmacists rely upon for assistance in prescribing medications to patients. Although the primary physician is most responsible in overseeing the management of the various medications his/her patient takes, specialists and sub specialists involved in providing care must also be fully informed of the myriad of medications being prescribed. This has been a major concern and one that falls often upon the patient themselves to understand and comprehend. A collaborative, ongoing relationship among physicians is most important, but you must assist in assuring this collaboration continues as many physicians enter and exit throughout your journey. Once again, remember that YOU are the person most responsible for your care and You are the one person who has the most critical impact upon your health status.
Let me speak briefly on the subject of organ donation. If you are fortunate to be a donor recipient, then do your part and follow the plan prescribed for you. There are many people seeking organs on waiting lists with so few organs available. There is a very strong need for more donors. As of March 19, 2007, the Organ Procurement Transplant Network (OPTN) National Patient Waiting List (for organ transplantation) listed the following requirements: kidney – 70,516; liver-15,925; pancreas-1,741; islet cells-293; kidney and pancreas-2,376; intestine-231; heart-2,819; heart and lung-121; and lung-2,808. This represents 94,722 individuals who are in dire need for organs (not including corneas, skin, bone, or sclera). A single tissue donor can improve the quality of life for more than 50 people. The demand is great and the need for more donors is ever so critical. I realize and empathize with those who seek donations, but may not receive organs due to the shortages that exist. An average of 18 men, women, and children die each day waiting for an organ transplant; in 2006 this translated to 5,423 people who died waiting for an organ. I have been one of the fortunate ones; I was blessed to have received both a pancreas and a kidney. I shall ever be indebted to the parents and to their ten-year old son, whose gift gave me life. Had it not been for his donation, I would never have had the opportunity to live these past 14 years. They have provided me the time to tell my story.
I have never felt self-pity. In many ways, I have been among the very fortunate. As I said earlier, I have had a full and enriched life. Many people have had more serious diseases and physical and mental obstacles to overcome. I strongly believe that every person has a purpose in life and in telling my story I believe I am fulfilling that purpose. I am convinced that this story must be shared with others. I do not fear death nor feel my journey from being a diabetic to transplantation to transplant-diabetic has diminished my zest to continue living. It is my sincere hope that my story will help other people in their journey with diabetes management, their awareness of transplantation, and their strength to endure in living a more fulfilled life despite the obstacles they face Many people have much more to share than I…perhaps this will inspire them to do so.