Home Dialysis Patient Andrei Explains How to Make the Best of the Reality of CKD
Summary
Andrei’s quality of life and outlook has improved significantly after going from feeling powerless in an “aquarium” at in-center hemodialysis, to freedom and flexibility on Tablo at home.
Andrei and his family emigrated to the U.S. from the Philippines in 1998, when he was 17. Now 42 and living in Orange County, California, Andrei’s health journey has taken him from acute kidney failure and hospital dialysis to in-center treatment, and a diagnosis of IgA nephropathy (IgAN). But it’s his positive attitude and willingness to try something new that has changed his life. This May, his care team introduced him to the Tablo® Hemodialysis System, and now he’s able to do his three-day-a-week treatments at home, when it works for his schedule.
In high school, Andrei was active in varsity basketball, running every day and lifting weights. He knew that kidney disease ran on his mother’s side of the family, but doctors didn’t give him any direction on how to preserve his kidney function. His health status includes other risk factors for kidney disease, including being overweight, and having hypertension and hyperlipidemia (high cholesterol). He also smoked cigarettes for about 20 years, but quit in 2019 when he decided, with his long-time girlfriend Helen’s help, to improve his overall health and kidney health (see Box below).
Smoking and Chronic Kidney Disease
- Smoking may be associated with a higher risk of CKD progression
- Smoking can affect medicines used to treat high blood pressure
- Smoking slows the blood flow to important organs like the kidneys and can make kidney disease worse
Sources: National Kidney Foundation; Centers for Disease Control and Prevention
His doctor continued to monitor his kidney function, as he had protein and blood in his urine, but his function stayed fairly steady for about 17 years, from age 24 to 41. Then, in 2021, he was referred to a nephrologist, who ran tests and said his kidney function was beginning to decline. Andrei says he wasn’t feeling badly health-wise at that point.
In May 2022, Andrei underwent a renal biopsy, and within two days his nephrologist called him into his office. He found out he had IgAN, a serious condition in which the body’s immune system produces antibodies in the kidneys, that cause inflammation and kidney damage. Symptoms of the disease, which usually progress slowly as Andrei’s did, include hematuria, or blood in the urine.
His nephrologist also told him he was approaching kidney failure, with his kidney function at 16%, but he also said it is treatable, with dialysis. He was put on medications for several months to help delay the need to start treatment. Then, in December 2022, Andrei started having neurological symptoms of acute renal failure, including slurred speech and confusion. On January 3, his family took him to the ER, and he was admitted to the hospital.
New Year, New Reality
Andrei had his first dialysis treatment on January 7, 2023, in the hospital via a chest catheter. He says he doesn’t remember the week he spent there, as he was in a lot of pain due to the high level of toxins in his blood.
“When I first started dialysis, I was completely drained,” he says. “I couldn’t move, and everything hurt due to my high phosphorus level. I was also in shock and couldn’t really absorb what was happening.”
After Andrei was out of the hospital, he began in-center dialysis three evenings a week at a facility close to his home, after switching nephrologists to Orange County, from one based farther away in Los Angeles.
“I was very weak at first, and thankful that Helen, who was working but went on temporary leave to help me, took me to treatment and back home,” he says.
Andrei says that the reality of his situation was also sinking in. “I felt like my life was over, and I was doomed to dialysis,” he says. “As a patient, you feel like you’re in an aquarium when you’re at the center, just sitting there in your chair during treatment watching and listening to the nurses.”
A Plan to Go Home
Initially, the plan was for Andrei to transition to nocturnal peritoneal dialysis (PD) at home, and he had catheter placement surgery and started training, all while going to in-center dialysis. However, scar tissue from past umbilical hernia surgery prevented the PD catheter from working properly. Even after two revision surgeries, as of February 2023 it still wasn’t working, and the decision was made that it wouldn’t work out as an option for him. Andrei was depressed at this news, as he would be stuck on inflexible and time-consuming in-center dialysis.
Then in March, Andrei’s PD nurse mentioned he could still do dialysis at home, using a new machine called the Tablo® Hemodialysis System. Helen would need to be trained also to help him with treatment. But Andrei really wasn’t interested in being trained on a new machine, as he had just gone through PD training that disappointedly didn’t work out. In June, he had arteriovenous (AV) fistula surgery in his left arm to get ready to use it as his permanent vascular access, and he stayed with his in-center schedule.
Soon after, an in-center nurse told him, “Did you hear, we’re getting the ‘Tesla of dialysis machines’ here soon? It’s high-tech but easy to learn and use at home, and much smaller than the huge machines you’re used to.”
Andrei was still doubtful, as his impression of what home dialysis might be like was based on the complex machines he was treated on in-center. He was also concerned about what if it didn’t work for him.
A Life Change
A few weeks later, after he thought more about it, Andrei decided to visit the dialysis center that had Tablo, just to check it out. After a home hemodialysis nurse showed he and Helen the touchscreen capabilities and how quickly the machine can be set up, and said he would be able to do his dialysis when it works for his schedule, Andrei immediately decided to switch to that center and start training to go home on Tablo.
“When I found out I would be able to use my chest catheter temporarily as my access for treatment, my mind was made up and I said let’s go for it,” he says. “Also, I could manage treatments conveniently when it works for my and Helen’s schedules, which was amazing,” he continued.
Andrei started on Tablo at home in early June 2023, and now treats at home on Tablo three times a week, Monday, Wednesday and Friday, four hours per session. He usually starts treatment at about 5:30 p.m., has a small snack while dialyzing and dinner afterward. Helen helps him with disconnecting from the machine.
“The main impact on my life has been the freedom and flexibility.” – Andrei
“I can do treatment when I wake up, or I can do it in the evening. The flexibility is ridiculous!”
He goes for monthly check-ups at the center, and handles his regular bloodwork from home. His labs have been excellent, and his nephrologist is pleased with his progress.
In late August, he also started training to access his now-mature fistula via the buttonhole technique, and is scheduled to have his chest catheter removed in October. He is also going through the process to determine his eligibility for the kidney transplant list.
To other chronic kidney disease patients who might be considering doing home hemodialysis, he suggests something they can do as a first step. “If you’re even considering it, just start watching how the nurse manages your vascular access, as you’ll be doing the same sterile prep at home and you get used to it quickly.”
Andrei also says in addition to being able to stay out of the dialysis clinic, he has enjoyed getting back to the gym. He is also happy to have more energy over the past few months to help take care of his teenage nieces and nephew, and enjoy time with family. He hopes to go back to work soon as well, in psychiatric care. After all he has been through, he is also educating his family about getting their kidney function and blood pressure checked regularly.
The views and opinions expressed in this blog post represent the personal opinions of the parties interviewed. The content should not be taken as medical advice. Never ignore professional medical advice in seeking treatment because of content you have read on the Outset Medical website.