(This story was updated January 2024)
Being a good patient means many things. Perhaps most important is learning as much as you can about Alport syndrome, getting the right information and maintaining a positive attitude. You can live a good life with kidney disease.
My name is Sheena. I was born and raised in Astoria, Queens. At age 4 I was diagnosed with Alport syndrome, a genetic kidney disease. The challenge began when I went for my 4 year old annual check-up and took a urine test. The doctors had found blood, white blood cells and slight protein in my urine and did some research. My parents were told, after 2 weeks of waiting, that there was a possibility I could be developing an early stage of Alport syndrome but needed further testing before it can be confirmed. At the age of 4, I was too young to understand what was going on. But then, who can really understand a kidney disease and why it happens or to whom it happens? Dr. Valerie Johnson at the New York-Presbyterian Hospital was assigned as my pediatric nephrologist. Dr. Johnson knew she had dropped a ton of bricks on my parents and tried to put them at ease. She explained the description, the genetic changes, inheritance, treatment and how it may cause hearing loss, loss of vision and other additional information. She tested my parents, sister and younger brother but no one in my family was a carrier but me so my diagnosis came as a surprise. She said Alport syndrome can occur spontaneously with no family history of the disease which is called a spontaneous genetic mutation. She assured my parents that I will be able to live a fairly normal life as long as I take my prescribed medications (if any) and follow a healthy diet. My family members thought my condition had been misdiagnosed or my urine analysis got mixed up with another patient’s results.
Finally, my parents faced reality. They wondered how they were going to deal with it as well as myself because I was too young to understand what was happening to me. Dr. Johnson had arranged for me to see her at least every 3 to 6 months. At the clinic I remembered seeing patients treated for all different types of kidney conditions. I always wondered to myself “what am I doing here? “ The majority of people I’ve seen were being treated for hemodialysis which is the use of an artificial kidney attached to a machine to filter the patient’s blood. This is intimidating when you realize what other people have to go through but being so little I didn’t know what all that meant until I got older. I was in kindergarten preparing for my graduation at PS122Q when my mother told me I was going to be missing a few days of school because I had to go to the hospital for a few tests and have a kidney biopsy done. I was terrified because all I could think about was needles and didn’t know what a biopsy was. I was really disappointed missing school cause I loved my teacher and classmates and not to forget graduation practice.
I remember being given anesthesia and the doctor performing the biopsy told me a story about being an astronaut on the moon holding a yellow balloon. I woke up the next morning not really remembering much of anything that happened. From the results, my condition was mild and no other changes were detected. I continued to see Dr. Johnson every few months to see if there were any changes developing. My condition stayed the same until 10 years later in August of 1999. The protein and blood in my urine began to increase and my doctor decided that I needed to take an ACE inhibitor, she had prescribed Monopril. I started to take the medication but I was experiencing some side effects that affected my body and had to be hospitalized. I was able to leave the hospital 2 days later and continued my recovery from home for a few weeks before returning to school. During that time I worked with a tutor to keep up with my classmates, and was able to even take my annual school achievements tests on time.
About the same time I return by ed to school, I started participating in physical education activities to maintain my overall physical condition. My family has been so supportive of me. They have helped me maintain a positive attitude and they have always been very open with me about my condition. At that point in my life I also started to educate myself more about Alport syndrome. I decided to go to the library and did research on the Internet to learn all I could about Alport syndrome. Having the knowledge and understanding what was happening to my body really helped me prepare for any future processes I could possibly have to undergo. I had some ups and downs in high school with my health but it didn’t stop me from graduating at Long Island City High School. After high school I wanted to attend culinary arts school but my parents decided we were going to move to Florida. I was 18 at the time and moving was a big challenge for myself as well as my siblings. I went for my last visit with Dr. Johnson and had to request all of my medical records. I knew I was no longer going to be a patient of hers but she did recommend a few nephrologists in Florida that can treat me.
I had my annual check-up with my regular physician and she referred me to go to Shands University of Florida in Gainesville to see Dr. Richard Neighberger. I had a few check-ups with him and about a year after my initial diagnosis in September 2006, he decided it was necessary that I get another kidney biopsy done because according to my urine results the blood and protein slightly increased and it had been more than 10 years since my last one. I spent 2 nights in the hospital after the biopsy. My kidney function was okay but there were some abnormalities in the basement membrane of the glomerulum. I was given some medication for the pain but overall, the biopsy went well. After my recovery I continued to exercise regularly, ate a balanced diet and maintained a healthy weight. After the second biopsy my medication changed from Monopril to Enalapril and in 2023, my medication was changed again to Lisinopril.
Most people strive in life to be successful but most find difficulty in achieving their full success. I believe the key to my success in the future is my education because with education I can be the master of my own life and goals. I continued to attend my college courses until I graduated as a Dental Assistant in 2007. I decided to further my education in Cosmetology/ Esthetics and graduated as well in 2009. A few years later I went back to school for Nursing Assisting classes and in between my education I had the honor to publish a children’s book called “Rainbow Under The Sea”. I have a passion for writing and illustrating and hopefully I’ll have many more books published in the future for children. With education I can be the greatest in what I want to be in life, I can achieve and also surpass the expectations set for me. I went back to school in 2016 and graduated in 2019 with my BSN in Healthcare Administration. My education is the most important during a young age because what I do now or did in the past is going to affect the future and more specifically my future. Most don’t realize what happens in the past will affect their future so I am making sure my past affects my future in the most positive way possible. The only way to secure a stable life for myself is to be well educated and gain knowledge.
Now my life doesn’t really revolve around too much medical care. I love being around my friends and family. I also enjoy cooking, reading, shopping, working, traveling and most of all helping other people when they are in need. On October 14, 2010 I was blessed with my son Xzavier and on August 19, 2018 I was blessed with my daughter Lily. Being a single mother, looking into my children’s eyes, that’s where I find my strength and hope. God is good and he will help every single mom out there to make it through. Xzavier got tested for Alport syndrome in 2013 and currently on Lisinopril and Lily got tested for Alport Syndrome in 2022 and her choice of medication is pending. Xzaviers results showed that he does have early stages of Alport syndrome as well as Lilys. Both my children started seeing the same Nephrologist in Gainesville, Florida that I was seeing when I first moved to Florida. Every day is a struggle but I turn to god because no matter what happens he never turns his back on me and my kids. I have been happier and stronger now. My children always put a smile on my face and brighten my days. I may still have troubles but everything will work out. Despite my difficult path, signs today are positive for me and my children according to our current Nephrologist. They only ask us to take our daily medication to prevent any harm to our kidneys, eat healthy and have our regular check-ups.
It is very important that a kidney disease patient have a positive attitude. A positive attitude will often determine the quality of life a kidney disease patient will have. Its importance cannot be overestimated. After many tests and much prayer, I’ve realized that this was real and I had to deal with it. No one has to go through any sickness alone. I believe there’s always someone available to lend you an ear. Talking helped restore my energy and positive attitude. This is a great time in my life and I’m loving it!
Thank you – Your web site is incredible! I fully believe things happen for a reason! Finding this organization and reading the stories of others that have or can relate to anyone with Alport syndrome, has been very therapeutic for me. Being invited to tell my story has unleashed some of the negative feelings and fear. I’m grateful to have been given the opportunity to share my experience. Thank You!