My life living with Alport syndrome (AS) spans over 50 years. My symptoms of kidney problems began when I was five years old. I was diagnosed with AS at age 7 in Houston, Texas after two years of testing and what I would characterize as well intended shoot-from-the-hip experimentation to discover what was causing my frequent urination.
In the early sixties very little was known or documented concerning AS. After a very unfortunate surgery and unpleasant medical procedures the diagnosis was arrived at with little hope for a future beyond the age of 12.
My view of life is unique after essentially spending what seems like half of my childhood in the hospital. Quality rather than quantity is what I have always strived for in life. I lived life thinking I only had a few years to live, trying to preoccupy myself so as not to think about my fear of dying. There was no grasp of the reality of death; I just knew it was coming. I lost my smile in Kindergarten after my health problems gained the attention of the doctors. It took 20 years to lose the phony smile and be open and honest about my true feelings. My smile today is genuine. In time I became accustomed to the private hospital room which literally became my personal playground and world. I became sort of an outcast with the neighborhood kids. No one really knew what to do with me, especially myself. To my knowledge no support programs existed in those early days. Parents had no place to turn to educate them to help their suffering children. When I was 16 years old I met my first social worker.
By age 12 I had lost 60% of my hearing and my kidneys were showing signs of damage. At age 16 I suffered a three month acute renal shut down that started with a severe case of Strep Throat. Apparently I was cheating death and began to think my time had finally arrived. After recovering from the Strep infection I was misdiagnosed with a urinary infection by a family doctor (I was voiding blood and had gained 20 pounds of fluid), while in actuality I was in full renal shut down. After a week of pain and blood loss at home I demanded to be taken to my Nephrologists‘ in the city. Thinking the failure was short term I was hospitalized and denied any food and given 25 to 40 ml‘s of water every hour to relieve the kidneys and slow the water gain, hypertension, etc. After three weeks and what felt like hours from death I was placed on hemodialysis. It was at this stage that my physical growth ended. My body required three months of dialysis to recover and I then discontinued dialysis. The kidneys failed permanently at age 18 during at the end of my first semester of college. I was now into chronic renal failure and back on dialysis. My hearing continued to decline and now my eye site was becoming an issue. My vision was decreasing and I had one cornea abrasion after another.
Jumping to present day, between age 18 and the present is a book, I am now age 52 with 50 plus surgeries which includes 5 renal allografts (transplants). The first four transplants were a bust for various reasons but all were documented as rejection. Currently I have been transplanted about eight years. My hearing has digressed significantly. I am deaf without the assistance of hearing aids (I began wearing hearing aids at age 12). My eyes have been surgically repaired by simple cataract procedures. I have almost no family history to track AS. My only sibling, a brother, and his three grown sons do not have AS from what we know. His daughter has two sons who do not appear to have AS.
I required dialysis for 20 years of which I performed home hemodialysis for about 15 years. Somewhere in the mix I was on Continuous Ambulatory Peritoneal Dialysis (CAPD) four and a half years. I never was one to fit into outpatient dialysis centers. I found I could customize my treatments and live a healthier life and therefore be able to maintain a career and active lifestyle of my choice. As a home patient I spent an extra 4 to 5 hours a week dialyzing. I have always been a maverick but I was and continue to be a compliant patient. I am alive today because of my faith in God, family and friends, dedicated health care professionals, an unstoppable drive instilled in me by my father, a positive attitude, and education.
I am a former patient advocate in the renal community. I worked in a dialysis center as a machine and patient care technician for five years. I have worked in the business and computer fields for 28 years. I went into seclusion over 10 years ago for various reasons but decided to take a look around and see what is going on in the dialysis and transplant community.
My feelings are strong for those who endure life with chronic ailments and of course particularly kidney disease. Chronically ill people do not get the opportunity to step off the field and take a rest in the game of life, rather they must keep going. I suppose I know no other way of life and find myself wanting to help others because I do feel a tremendous connection to those who walk the same path in life. There have been many times my life felt like a failing kidney slowly losing the ability to function and sustain life, unable to fire on all cylinders. There have been times when hope seemed to drain away like water. After many years of chronic illness the toughest battle occurs in your mind. But then I am reminded of how I am blessed and surrounded by those who love and care for me. End Stage Renal Disease (ESRD) is a devastating life event and I have experienced and witnessed the harm done psychologically, aside from the obvious physical deterioration. I hurt deeply when another kidney patient hurts because I know what they know and I feel what they feel despite the fact that we are all different individuals.
I continue to work and have an adopted girl who is now 13 years old. She struggles with Bi-Polar disease. My wife at the time was diagnosed with Fibromyalgia six months after we adopted our daughter at birth. You can imagine the stress in our family where all three of us struggled with chronic illnesses.
It is great to see the creation of the Alport syndrome Foundation that is dedicated to those of us and our families affected by AS. I never thought I would see the day where so much information and resources are available pertaining to AS.
I think I have discovered, at least for me, what I believe to be the keys to a successful life living with AS or rather just about any chronic illness.
- Patient education/Empowerment (you ARE a part of the health care team)
- Compliancy (live by the code)
- Exercise (critical to healthy bones, heart, vascular system and mental wellbeing)
- Responsibility/Ownership (despite having no control over a disease you were born with, you are in charge of your own life and responsible for what you do with it; AS is your challenge in life, never ever quit).
I am honored to share a small part of my story here at the Alport syndrome Foundation.