Rob’s Kidney Disease Journey Continues—Exploring Options and Starting Peritoneal Dialysis
In February 2020, Rob Barge entered a world of health and lifestyle changes, without much warning. A visit to the emergency room in the middle of the night revealed he had both kidney and heart failure. Since then, he’s had multiple surgeries, dozens of doctor’s visits, and started dialysis to treat end stage renal disease (ESRD). Last year, Rob shared his experiences as a person brand new to dialysis. This is part 2 of Rob’s story.
Therapy Choices—Rob Learns About Peritoneal Dialysis
While in-center hemodialysis (HD) helped Rob feel better, he wanted to explore every therapy option to ensure he was making the best choice for his health, his family, and his life.
“Someone mentioned peritoneal dialysis (PD) as a possibility for down the road,” says Rob, remembering his early days in-center. “Once I heard there was an option that lets you do dialysis at home, and it’s a gentler form of treatment, I was pushing to be on PD from the get-go.”
A heart condition meant Rob needed approval from his doctors to begin PD, and as soon as he was cleared, he started training. “I told my training nurse Deb, ‘Watch out because I’m going to be the most curious patient you’ve ever had, and there’s a reason for that. My goal is to be your best PD patient, so I want to learn everything I can.’”
Rob says his training was thorough, covering cycler use, loading cartridges, using dialysate fluid, sterile set-up practices, handling alarms, spotting signs of infection, and much more. After a few weeks, Deb visited the Barge household to help Rob and his wife Trisha get set up at home. Among other tips, she showed them where to place the cycler for maximum mobility during dialysis and helped them figure out the best spot to store supplies.
“We carved out a place to put the boxes,” says Rob. “Now when I get my delivery every 2 weeks, I know exactly where everything is going. So yeah, we’ve got a good handle on that.”
“Someone mentioned peritoneal dialysis (PD) as a possibility for down the road,” says Rob, remembering his early days in-center. “Once I heard there was an option that lets you do dialysis at home, and it’s a gentler form of treatment, I was pushing to be on PD from the get-go.”
A heart condition meant Rob needed approval from his doctors to begin PD, and as soon as he was cleared, he started training. “I told my training nurse Deb, ‘Watch out because I’m going to be the most curious patient you’ve ever had, and there’s a reason for that. My goal is to be your best PD patient, so I want to learn everything I can.’”
Rob says his training was thorough, covering cycler use, loading cartridges, using dialysate fluid, sterile set-up practices, handling alarms, spotting signs of infection, and much more. After a few weeks, Deb visited the Barge household to help Rob and his wife Trisha get set up at home. Among other tips, she showed them where to place the cycler for maximum mobility during dialysis and helped them figure out the best spot to store supplies.
“We carved out a place to put the boxes,” says Rob. “Now when I get my delivery every 2 weeks, I know exactly where everything is going. So yeah, we’ve got a good handle on that.”
Bringing Therapy Home—A Little Scared, A lot of Success
Even though he was confident in his training, at first the idea of doing treatments at home made Rob a bit nervous. He jokingly compares the feeling to coming home from the hospital with a new baby. “All of a sudden, it’s time to start doing things on your own, and you’re thinking ‘I don’t remember anything!’” he says with a laugh.
Despite the jitters, Rob and Trisha (who was there for much of Rob’s training) worked together to recall all they had learned, and he completed his first treatment without a problem. Now, months later, PD has become routine. If he has any issues with his PD cycler, which is rare, Rob has learned to count on Fresenius Kidney Care nursing and technical support, both of which are available 24 hours a day, 7 days a week.
“Usually, you can troubleshoot things pretty easily because the cycler tells you what to do right there on the screen,” says Rob. “But there was one time the alarm kept going off, and we couldn’t resolve it. I called tech support and they walked me through it step by step. We sorted it out, and I was able to continue PD and get it done that night.”
Rob says he has more energy on PD and feels healthier than at any other point since his chronic kidney disease (CKD) diagnosis. In addition, the freedom to do his treatments while he sleeps helps him keep a consistent schedule at work and home. “Because I’m self-employed, I had to keep working,” says the 57-year-old graphic designer. “It was tough to stop what I was doing at work and head to the center every other day. Also, one of my treatment days was Saturday, so HD would sometimes disrupt our family plans. With PD I have the option of doing it when it works best for me.”
Despite the jitters, Rob and Trisha (who was there for much of Rob’s training) worked together to recall all they had learned, and he completed his first treatment without a problem. Now, months later, PD has become routine. If he has any issues with his PD cycler, which is rare, Rob has learned to count on Fresenius Kidney Care nursing and technical support, both of which are available 24 hours a day, 7 days a week.
“Usually, you can troubleshoot things pretty easily because the cycler tells you what to do right there on the screen,” says Rob. “But there was one time the alarm kept going off, and we couldn’t resolve it. I called tech support and they walked me through it step by step. We sorted it out, and I was able to continue PD and get it done that night.”
Rob says he has more energy on PD and feels healthier than at any other point since his chronic kidney disease (CKD) diagnosis. In addition, the freedom to do his treatments while he sleeps helps him keep a consistent schedule at work and home. “Because I’m self-employed, I had to keep working,” says the 57-year-old graphic designer. “It was tough to stop what I was doing at work and head to the center every other day. Also, one of my treatment days was Saturday, so HD would sometimes disrupt our family plans. With PD I have the option of doing it when it works best for me.”
Always Looking Forward—Taking Steps Toward Transplantation
Although he appreciates the benefits PD offers, Rob has continued learning about his choices for ESRD therapy and is in the process of getting on the transplant list, with help from his care team at Fresenius Kidney Care Opelika. He’s had transplant evaluations at hospitals in Alabama and Atlanta, and a growing list of friends and family have offered to be tested as potential donors.
For now, heart valve issues are putting transplant plans on hold, but Rob is confident that a new kidney is in his future. In the meantime, he is focusing on a specific word and practice—patience.
“Getting a transplant is going to be a process,” says Rob. “It’s going to take time, so I’m trying to be patient. I think that would be my advice for anyone going through dialysis and thinking about changing treatments. Pursue what’s best for you but be patient with yourself and with everybody else involved.”
Keep an eye on Thrive Central in the coming months to find out more about Rob and his continuing journey with ESRD.
For now, heart valve issues are putting transplant plans on hold, but Rob is confident that a new kidney is in his future. In the meantime, he is focusing on a specific word and practice—patience.
“Getting a transplant is going to be a process,” says Rob. “It’s going to take time, so I’m trying to be patient. I think that would be my advice for anyone going through dialysis and thinking about changing treatments. Pursue what’s best for you but be patient with yourself and with everybody else involved.”
Keep an eye on Thrive Central in the coming months to find out more about Rob and his continuing journey with ESRD.
