Finding the Reason
Family, Faith, and a New Focus Give This PD Patient All She Needs*
*Susan is a NxStage Patient Advocate
When she was in her 30s, Susan found out something she never knew about her then 55-year old father. He had suffered with chronic kidney disease (CKD) for years and was a home dialysis patient.
“I didn’t grow up with him, but I knew him, and he let me know he had this disease and even showed me his machine,” she recalls. With the knowledge that CKD was part of her family’s health history, she opted to get tested, and came back clear.
But on New Year’s Eve 2004, her life and health were permanently altered when she was hit by a car while walking her dog. Susan spent four months in the hospital and another 9½ in a wheelchair. But worse news was yet to come. X-rays taken during her recovery showed she had cysts on her kidneys.
“I started to cry,” she remembers. “It felt like they gave me a death sentence, and that scared me.”
For more than 10 years she and her nephrologist kept an eye on things, and her kidney function remained steady. But her weight was a problem and she knew it. So after her husband passed in 2016 she made the decision to shed some pounds.
“It was now just me,” she says. “And I wanted to be around for my daughter and grandkids.”
Susan’s determination made a big impact on her life. She lost more than 80 pounds and was feeling better than she had in years. Unfortunately, 2018 brought what seemed like inevitable news – her kidney function was poor and she would need to start dialysis.
“I went and talked with the nurses and decided to do peritoneal dialysis (PD),” says Susan. “For my lifestyle that was the best thing. I’m in a seniors choir. I like to get out and go places and I don’t want my time tied up sitting in a center three days a week.”
Once she makes up her mind, Susan tends to move quickly. So after a physician-cleared trip to Scotland in July of 2018, she began to plan her next steps. In November of that year she found a new home just two blocks from her daughter’s house. In December, she had a PD catheter implanted. And by mid-January she was trained and doing PD with the Liberty Select cycler at home. She has never looked back.
“It just fits in so perfectly in my life and I can go to sleep at night while the machine does the work,” she says. “If there’s any problems with the machine it wakes me up.”
Typically, Susan is ready for bed by 10 p.m.. She gets her cycler and supplies set up and is hooked up by 10:30, just in time to watch one of her favorites, Stephen Colbert.
“There are nights when I sleep straight through, and other nights when I turn over,” she explains. “You can move around with the tube. It’s soft. Your bed is soft. As long as I don’t crimp it, I’m fine.”
With her days free, Susan has time for her passions and interests. She is an active member of her church, where she volunteers and sings in the choir. Since fall of 2016, she has also been a member of the Sounds Good Choir, a group with more than 100 members that performs songs like “Teenager in Love” and “Blowing the Wind.” An accomplished pianist, she also plays show tunes and sings at home.
Two of Susan’s other passions are her granddaughters, ages 9 and 13. She visits them often and is proud of their accomplishments, such as earning black belts in karate. “They are just the love of my life,” she says. “They brighten my day.”
An avid traveler, she recently took a family trip to Texas, where she stayed in several locations. “I had all my supplies delivered to the three hotels – cassettes, bags and fluids. I was a little apprehensive but it went really smoothly.”
To patients considering PD and who might be apprehensive, Susan says she felt the same way, but after working with her nurse she was able to learn everything required to go home.
“This is something new, and it’s normal to be nervous and scared,” she offers. “But if you listen to your dialysis nurse you’ll know that they are always there. Also, customer service is great and tech support is so helpful. You get a human on the phone that can talk you through any troubleshooting.”
With 18 months of PD in her rearview mirror, Susan was asked to train as a Patient Advocate for NxStage Medical/Fresenius Medical Care North America and tell others her story. She now shares her experiences and encouragement with dialysis patients who want to learn about PD therapy.
“I was so scared when I first started on this and first found out. I thought ‘Maybe it’d help to hear from someone who has been a patient for a while,” she says. “They say there’s always a reason for everything, and (after my accident) I used to think ‘What is my reason?”
“People would say, ‘You’re an inspiration for me. You had this accident happen, and you got up and walked.’” Susan ponders. “And I wonder if maybe this is my reason. Maybe this is what God had in mind for me.”
The reported benefits of peritoneal dialysis may not be experienced by all patients.
Peritoneal dialysis does involve some risks that may be related to the patient, center, or equipment. These include, but are not limited to, infectious complications. Examples of infectious complications include peritonitis and exit-site and tunnel infections. Non-infectious complications include catheter complication such as migration and obstruction, peritoneal leaks, constipation, hemoperitoneum, hydrothorax, increased intraperitoneal volume, and respiratory and gastric issues. It is important for healthcare providers to monitor patient prescriptions and achievement of adequate fluid management goals.
Patients should consult their doctor to understand the risks and responsibilities of performing peritoneal dialysis.
Indications for Use: The Liberty Select cycler is indicated for acute and chronic peritoneal dialysis. The stay•safe PIN connectors are intended for use with a peritoneal dialysis (PD) cycler for drainage and infusion of PD solution during PD exchanges. The stay•safe PIN connectors are indicated for use in acute and chronic peritoneal dialysis.