Two women, two inspirational stories about living an active, fulfilling life while on dialysis.
JessieThe rigors of treatment mean that it’s hard for dialysis patients to sustain employment, although many continue to work. One such patient is 23-year-old Jessie. Her kidney failure resulted from a disease called Atypical Hemolytic Uremic Syndrome. She started dialysis at the tender age of 12 months. She did get a transplant once, but it lasted only 9 days. Despite all the challenges she has faced, she maintains a “normal” life.
While dialyzing as an in-center patient three times a week, she continued to go to school. Lots of children on dialysis are home-schooled, but not Jessie! While in school, she participated in musicals and worked in the bookstore. Jessie is also an animal lover who has three pets.In college, along with her studies and her dialysis treatments, she had part-time jobs (always with animals). I asked her whether she told her employers about her health, and she said, “Honesty is the best policy.” Her dialysis schedule means that there’s no hiding the fact that she has kidney disease. In May, Jessie graduated from college with a degree in Veterinary Technology. She’s also just finishing up the last few tests needed to get on the transplant list.
I asked her how the kids in school treated her and how she dealt with the dialysis diet all these years. She said, “Kids are cruel but were much better in college.” She’s made some great friends and has a really supportive family. When friends have parties, they ask Jessie what food they should get for her. She added, “If there’s any advice I would share with children, teens, or other young adults, it’s to adhere to your diet.” She noted that there are always substitutes for forbidden foods. “You might not be able to have potato chips, but you can have Doritos instead,” she noted.
I asked Jessie how she manages to balance her busy life, and she said, “You just do it.” To me, she’s like a bulldozer—she just keeps forging ahead. Now she’s saving her money for a car and interviewing for a full-time position as a Veterinary Technician, and she hopes to move into her own apartment one of these days.
Myra Myra has had chronic kidney disease for many years. She was diagnosed with Light Chain Disease in 1970, but her symptoms didn’t appear until the 1990s. She then spent 10 years on in-center hemodialysis. For many of those years, she managed a cookware store—a job she greatly enjoyed. Unfortunately, the store eventually went out of business, and Myra was left without a job. In addition, her husband couldn’t deal with her illness, and they eventually divorced.
Humor and creativity have always helped Myra cope. As time passed, she began to feel better. An improved sense of well-being led to renewed energy, and she decided to throw herself a 40th birthday party. To her surprise, she was given many pieces of beaded jewelry. She said to herself, “I can make this!” These beads seemed to ignite her inner artist. She had always been artistic and remembered that “creating things with my hands always brought me contentment as a child.” She also remembered that she had a box of antique beads in her parents’ attic. She could see that box in her mind’s eye and found it exactly where she thought it would be.
Myra started making jewelry, including necklaces, earrings, and bracelets that were adorned with all sorts of natural materials in the shape of a kidney. Friends began asking her to make custom pieces, and a business was born. She called it (aptly) Phases. She designed a website, went to jewelry shows, and eventually opened a gallery in her home. All her dreams were coming true.
Myra got a second chance when her cousin’s wife, Fran, offered to donate her kidney. They had the surgery in 2002, and it was successful! Myra was fortunate to be able to turn a creative hobby into a business. Today she feels incredibly grateful for the life she has. As she sees it, “It took a medical crisis to turn my life around and help me find the work I was meant to do.”
About the Author
Julie Glennon received a successful kidney transplant in 1999 after being diagnosed with both lupus and chronic kidney disease in 1988. She keeps active by volunteering with the Kidney Association of South Florida where she lives with her husband. She is also a weKAN activist and HOPEline operator with Renal Support Network.
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