Dialysis patient writes book
By BRENDA HARRISON Editor of The News Journal Florence, S.C.
Carol Coaxum never had the desire to be a writer, but after living on dialysis for 15 years, she felt compelled to write “Twelve Steps To Surviving Kidney Dialysis.” Her book was published earlier this year.
Carol, 48, wrote the book with new patients in mind hoping those living on dialysis will benefit from her guidance and advice.
“For many years, I watched new people come to the hospital or clinic for dialysis and I could see they were scared and anxious. So, I tried to help by telling them what to expect and by answering questions,” Carol said.
Friends suggested she write a book. She began taking notes and journaling her experiences during kidney treatments.
At the age of 29, Carol, who had never been sick, suddenly noticed vision problems. She was a busy mother, wife and nursing student at the time, so she kept putting off a doctor’s visit until the pain got to bad to bear. She discovered she was blind in her left eye and going blind in her right eye. Further tests revealed fluid on her brain.
A neurologist at MUSC diagnosed her with pseudotumor cerebri, a rare condition associated with excess fluid in the skull. The fluid which protects the brain and spinal cord, is normally absorbed into the blood stream. This condition can happen when the fluid isn’t fully absorbed causing build up, which can lead to headaches and vision problems.
Carol had emergency surgery to remove the fluid and was hospitalized. After about a year living with this disease, her kidneys started shutting down and in 1999 she began dialysis treatments. During this time, it was discovered that one of her kidneys had never developed, so she had just one working kidney. Also in 1999, a shunt was inserted to keep the fluid off her brain.
During dialysis treatments, the patient is connected to a machine that acts as artificial kidneys. Three times a week for three to four hours each session, the dialysis machine cleans the blood of toxins and extra fluid.
Carol initially began dialysis treatments during daytime hours, but now she is nocturnal which means she takes her treatments from 8:30 p.m. until 4:30 a.m., three days a week. It is a slower process requiring 8 hours, but she sleeps through much of the treatments.
Carol said she feels a lot better after dialysis and with the slower treatments she has noticed more energy.
Carol has retained her sight in her right eye, but she admits problems distinguishing some colors. Due to her illness, she had to leave nursing school. Today, she can’t walk as much and she doesn’t drive anymore, admitting driving was hard to let go of.
However, as the mother of a 12 year old at home, she is able to cook, clean, do laundry and shop. She also sings in her church choir.
Carol is still able to travel and goes to New York every year, getting treatments there. Dialysis patients can go where ever they like and get treatments in the city they visit, she noted.
“You can live life in fullness,” she explains. “You just have to do it a different way.”
She and her husband Gerald have three older children and seven grandchildren.
In 2004, Carol had a kidney transplant, but a dose of double pneumonia in 2006 caused it to fail and she was back on dialysis.
Carol receives her dialysis treatments at Fresenius Kidney Care on North Cashua Drive. She and many of the other patients have become good friends.
Carol says it is a scary thing to be hooked up to a machine and watch your blood go in and out of it, but it doesn’t bother her anymore.
Many of the newer patients who have purchased her book have read it over and over, they tell her.
Her book is divided into 13 chapters, with one chapter for each step. The most importance steps are support from family and friends, she says.
“My heart just goes out to them,” she commented, explaining you sometimes have to ask for help.
Willpower, spiritual focus, humor, independence, motivation, nutrition, trusting, patience, knowledge, faith, facility and staff compete her 12 steps for surviving kidney dialysis.
Carol is proud of her nephew, Alonzo Rivers of Pamplico, who did the illustrations for her book.
Now that she has her first book behind her, Carol plans to write a children’s book.