Up and Moving Again!
When you first hear Vera Foreman's voice, you can't help but notice a sense of excitement and energy. She's an on-the-go kind of lady. With two teenage children, a part time job and her volunteer work, it may surprise many that she has end-stage renal disease (ESRD).
Vera has always sped through life by embracing the positive. However, she had to shift gears in 1995 when doctors diagnosed her with focal segmental glomerulosclerosis or FSGS. At the time, Vera was working in the Department of Pathology at Texas Children's Hospital as a Systems Manager. Since the department provided free lab work for its staff, Vera took advantage of the service. She began getting labs drawn in 1993. She had asked one of the pathologists (Dr. Edith Hawkins) to explain her lab values. The lab results showed Vera's protein level to be slightly elevated. She was told to keep an eye on it. "I was getting lab work done on a regular basis. I kept checking it and over time, the numbers kept getting larger. When I showed one of the pathologists my lab results again, she told me it was time to go see my doctor."
Vera's doctor performed more extensive lab work and tests, performed a 24-hour creatinine clearance and took a biopsy of her kidney. "That's when I learned my diagnosis, FSGS. At the time, I didn't really understand the magnitude of the diagnosis. The entire faculty knew. My boss, Dr. Gregory Buffone, came to my office and said, 'If the job and family life gets to be more than you can handle, let me know so we may rearrange your schedule and workload.' This was very comforting. However, I still wasn't getting what all the excitement was all about among my co-workers and family."
FSGS is a disease that affects the kidney function by attacking the glomeruli, the tiny units within the kidney where blood is cleaned. Glomerular diseases damage the glomeruli, letting protein and sometimes red blood cells leak into the urine. Sometimes a glomerular disease also interferes with the removal of waste products by the kidney, so waste can build up in the blood.
Over time, Vera started to really feel and see some of the symptoms that come with a kidney disease diagnosis: fatigue, swelling ankles and puffiness. Doctors treated her for intracranial pressure (pressure on the brain) and allergic reactions to steroids. Vera also suffered from a stroke. And if life couldn't get any worse, she and her husband divorced. Also during that time, her older brother, mother and sister died. All of these events put Vera's life in neutral. However, due to her strong faith, she was able to pick herself up and continue to plow through life.
Doctors explained to Vera she would soon have to be placed on dialysis. She was not a candidate for a kidney transplant. So, she did everything she could to learn about dialysis and the various modality options. She even visited a dialysis unit. "I thought the unit was very clean. It smelled like bleach. I said hello to all the people. However, I told them I'd come by and say hello every now and then, but I'm not coming here!"
But she kept feeling tired. "I couldn't even put on a pair of pants without getting tired. I would put one leg in and then rest before putting the other leg in." Weeks later she began in-center hemodialysis. At first, being in the dialysis center depressed her. According to Vera, the patients at the unit looked like they had given up. "I knew that somehow, I had to make a difference." She hated just sitting there, so she decided to make a few changes for her own mental and emotional health, as well as to inspire and encourage others. First, she asked to be put by a window during her dialysis session. She decided she would get dressed for her dialysis session as if she was going to work (this inspired others to do so as well). And then she started bringing pretty cocktail glasses to the unit for her drinks. "I would sit by the window and pretend I was at the beach or some tropical place," she says with a laugh. "It helps to change your emotional chemistry."
As Vera's health started to improve, so did her spirit and energy. She started volunteering with the National Kidney Foundation. She saw a need for a patient support group in her community, so she started her own organization: People of Power and Purpose (PPP). The group met monthly for educational seminars, went on field trips such as fishing trips and took trips to the beach. They even chartered a bus and drove to San Antonio, Texas, (about 120 miles) for an AAKP Kidney Beginnings: Live program.
Vera learned about AAKP after picking up a copy of aakpRENALIFE. She applied for a Chapter charter and soon turned her own organization, PPP, into an AAKP Chapter. Vera says a life changing event occurred in 2006 while attending an AAKP Annual Convention. She had read about home hemodialysis and asked a social worker who was speaking at the program about the dialysis option. The social worker sent her information about home dialysis. "I was so excited about the possibility of feeling better, being at home and getting some of my independence back! Everything about it was a plus. You feel better, flexibility, no driving to a center and the ability to work part-time if you choose. I presented the information I'd learned about a particular home hemodialysis system to my nephrologists, who then gave me the "green light" to go for it, and I did! Within a month, I started the two-week training and I had a home dialysis machine at my house. And my brother Glenn, who is also a dialysis patient, went home with a dialysis machine as well within two months."
Vera's daughter Kiera, who was 16 at the time, trained with her on how to properly care for Vera and operate the machine. Vera's son, Kuinn, who was 15 at the time, trained with Glenn. "I'm not going to say home dialysis was easy at first. It takes work, but it's well worth it. I haven't had to take any blood pressure medicine since being at home. I don't even take diabetic medication anymore. Home hemodialysis has given me my independence. I can do my dialysis session and go cook dinner immediately. Oh, did I mention that on rainy and cold days, how wonderful it is that I can dialyze and sit in my big chair and watch my big television or read and look out of the window and count my blessings that I don't have to go out?"
Vera's initial start on home hemodialysis took an emotional toll on her daughter. In the beginning, Vera usually waited until her children got home from school, which was at night because of after school activities, to start her dialysis session. "But one day my daughter had a meltdown. She told me she thought she was responsible for my life, which overwhelmed her. When she told me that, I felt horrible. I decided then I could do it myself." Although she does her treatment at home when her children are there, they are doing their own things such as homework, reading, television, etc.
Vera's daughter plans to go to college and then medical school once she graduates from high school this year. She wants to one day become a neurologist. Her son wants to go into the medical field, but is currently undecided.
In-center hemodialysis left Vera feeling wiped out and drained. Now that she's on home hemodialysis, she feels like she's using premium gasoline. She dialyzes for a little more than two hours six days a week. "It may seem like a lot, but its not. By the time you watch a movie or two episodes of Walker Texas Ranger, the treatment is complete. With two active teenagers, her new treatment allows her to cheer her son on at football games and band concerts, and attend her daughter's orchestra concerts and dance competitions. She's also volunteering at her church and even working part time.
"I am spoiled. I wouldn't trade it for anything in the world. I would recommend home hemodialysis for all patients who are physically and emotionally able to do so. It is life changing!"
Jerome A. Bailey is the Communications Manager for AAKP and Editor of At Home with AAKP.
This article originally appeared in the March 2008 issue of At Home with AAKP.
Author David ScottPosted on August 28, 2016 Categories Dialysis
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