A Life with Kidney Disease
I am not a physician, the details here have been referenced at the bottom of the article, and the information detailing my mothers past and present health was acquired from her with consent for use of this article.
Kidney Disease Facts
Kidney disease affects 5-10% of the world population. It is often times a disease that worsens as years go by as kidney function begins to fail resulting in waste build up within the body causing damage to other organ. In 1950 alone kidney disease caused over 409,000 deaths, during a time when medical advances involving internal organs were developing with haste. Surprisingly the deaths from the disease have increased since then to a whopping 956,000 in 2013. With a shortage of donors and the inability to find an appropriate organ match many people remain on a waiting list to receive a transplant for years until eventually their kidneys fail entirely, and without the proper transplant they unfortunately die. Hospitals and other health facilities try their best to comfort patients in these situations and make them as comfortable as possible.
Symptoms of Kidney Disease:
- Sudden changes in urination that worsen with time including a change in frequency, color, urine may become foamy, odorous, bloody, and you may have trouble urinating or feel pressure
- Swelling across the body including but not limited to the abdomen, legs, ankles, and face
- Skin irritations, rash, itching, discoloration
- Metallic taste in mouth, or "ammonia breath"
- Nausea and Vomiting
- Leg and flank pain
If you or someone you know is experiencing similar symptoms, do not hesitate to get checked by a doctor. With any disease or illness, early detection is your best defense.
- Kidney Disease Info | Risk Factors | Life Options
The Life Options Rehabilitation Program is dedicated to helping people live long and live well with kidney disease by identifying and addressing the challenges faced by people with kidney disease, with the goal of improving longevity and quality of l
Born with Kidney Disease
The year is 1954, my mother was born feet first after a grueling labor as an otherwise healthy baby in the deep mountains of Tennessee. A happy baby who blossomed into a toddler that wasn't developing like her brothers and sisters for her age. Not only could she not walk, but her abdomen stayed distended; and during the transition from diapers to learning to use the outhouse my mother couldn't hold her water in the slightest. Urine would dispel from her body in a steady stream without regard for time or place. My grandmother knew something wasn't right with her seventh child and took her to the Clinton Health Department.
The health department became like a second home until her condition worsened to the point where they couldn't help. She was then sent to be cared for by a doctor of Oak Ridge where they attempted to insert a tube through her naval which connected to a colostomy bag tied at the end of her leg to attempt to control the flow of urine. After many months, this treatment failed several times over with infection after infection which responded negatively to the antibiotics of the time. The tube was removed and my mother was referred back to the health department.
Back at the health department with their first attempt having failed, she was referred to two physicians within the Crippled Children's Service at the University of Tennessee Medical Center at the age of eight years old where they attempted to save the kidneys.
The doctors told my grandmother they had two options; 1. She could continue to be untreated with possibly six months remaining to live or 2. undergo a procedure to put a colostomy bag on her side with a piece of her gut to catch her urine in an attempt to add years to her life while trying to save the kidneys which were chronically infected. My grandmother decided to go ahead with the surgeries. The surgery was a success with the colostomy bag but 10 days after the surgery while in the children's recovery ward after her stitches were removed her incision tore open, in which her guts fell into her hands. They rushed her immediately into surgery to place her organs back in body, and resealed the wound. Between the procedure with the colostomy bag and the age of 22, my mother was on antibiotics and was used a Guinea Pig for new medications in an attempt to save her kidneys.
Many years later with no success they decided to go ahead and try a kidney transplant to save my mothers life, this was their final option as the antibiotics and experiment drugs had not saved the kidneys. First they removed her kidneys in September 8, 1976, then she underwent the transplant at Vanderbilt in Nashville Tennessee on October 19th, 1976, with a donor kidney from her sister. Afterwards she was released from Vanderbilt on November 25, 1976. with her new barley functioning kidney.
Often times my mother would have to undergo dialysis to filter her blood to take care of her kidneys which were susceptible to infection.
"I remember waking up in the hospital, I was hooked up to the machine, which I had never seen in my life, and all I could say to my mommy was, 'they're taking all my blood, they're taking all the blood out of my body!' My mommy had to call a nurse into the room to calm me down, and they explained to me that the machine was filtering my blood and putting it back into my body." -From my Mother
Life After the Transplant
Though my mother survived through and after the surgery with her sister's donated kidney, she was subject to kidney infection after kidney infection with different rounds on antibiotics to try and get it under control. She basically lived in UT hospital and became subject to trials of new medication to see how her kidneys and body would respond, often times totaling 70 pills being taken daily at the age of 16. Some caused adverse reactions including growing hair on her face like a man. After theses series of medication trials they found the magic combination to keep her kidney health under control, Medrol (Methylprednisoline) and Imuran (Azathioprine) which she was to take for the remainder of her life.
My mother now lives at the lovely age of 62 with the same kidney she received in 1976, making her part of the 1% of people who have received a kidney transplant and survived with the same kidney for over 10 years without requiring a second transplant.
Have you or someone you know had a kidney transplant?
- Resuming Life After Kidney Transplantation | Columbia University Department of Surgery
After a major surgery we all just want to feel normal. Here's some information from the Columbia University.
Everyone is different and all our bodies respond to illness and treatment differently. Disease is always a difficult thing to deal with, but with the correct information, proper patient care, and hope, you can almost certainly make it through anything, and don't let anyone tell your otherwise. They told my mother she had 10 years to live after the transplant, and she's made it 40 years with minimal issues.
Unfortunately without the advances we have in health care now, there wasn't very much information available to her about her life after the transplant. They told her to live her life happily and to do as she wished without any worries. Now she is suffering from Squamous Cell Carcinoma due to heavy sun exposure over her entire life with continued use of Medrol and Imuran. She is undergoing constant treatment to maintain the cancer and her kidney function is great. She lives happily with chronic pain and various other health issues, continuing to fight to survive, which she has always done.
Would you be interested in future articles detailing my mothers life and health?
A Little about my Mother
She is currently 62 years old and full of sass. She enjoys riding through the mountains, watching movies on SyFy, binge watching Castle, drinking coffee, working puzzles, using her tablet, playing with her three crazy puppies, going to church, and spending time with me on the weekends. She is the most amazing person I know, and I'm thankful for all she's been through so she could raise me and become the super hero that she was destined to be.