Dialysis at Home

at home

Modern therapies offer patients many opportunities to carry on their daily life as usual, despite being diagnosed with chronic kidney disease. An alternative to a clinic based dialysis treatment is being treated in a familiar environment at home. Different types of home dialysis allow patients to adapt their treatment to their everyday routine. However, every type of treatment has its own challenges.
Three portraits of home dialysis patients in Portugal show how it is possible to lead an active and independent life combining work, family and leisure time despite being diagnosed with kidney disease, thanks to home hemodialysis and peritoneal dialysis.

Freedom for
work and leisure

Sometimes, when Paula Lourenço strolls along the seaside with her partner, her thoughts drift to the distant shores of Africa. She pictures lions, wildebeests and giraffes running free through the open savannah. Her biggest dream is to go on safari in Kenya. But at the moment that is out of the question, because the 42-year-old has been back on dialysis for the past three years. Under such circumstances, Africa is simply too far away.

Yet Paula Lourenço has managed to create an exceptional degree of freedom for herself. For example, she continues to work full-time as an assistant at the IST School of Engineering in Lisbon despite dialysis. Her job involves placing orders with suppliers and overseeing contracts. It carries a lot of responsibility, and after 18 years her knowledge is hard to replace. That also means that her working days can be long.

But Paula Lourenço is also flexible in her spare time and makes sure that she has time for things she enjoys doing, such as cooking, jigsaw puzzles or swimming. On the weekends, she even drives all the way out to the Alentejo region with her partner, where she owns a farm and tends the garden. And soon she would like to spend time learning the difficult art of Arraiolos rug-making, a tradition brought over by the Moors, which is highly valued in Portugal.

“You have to be
very responsible and
sensible to do this
kind of treatment.”
Paula Lourenço

Paula Lourenço can only do these things because she has opted for home hemodialysis. She does not have to go to a clinic during the day at fixed times three times a week, but can incorporate the dialysis treatment more flexibly into her daily life. “Instead of watching television in the living room in the evenings, I just do it in my dialysis room,” she says. Since her four-month training program on home hemodialysis, Paula Lourenço has already completed around 500 home dialysis sessions. Her partner assists her in this. “Without him, I wouldn’t be able to do dialysis treatment at home,” she concedes. Fortunately, they have enough space to set up a dedicated sterile room that is large enough for the dialysis machine.

Paula Lourenço’s partner João Glória helps her
with home hemodialysis.

“You have to be very responsible and sensible to do this type of treatment,” admits Paula Lourenço. But the solution is ideally suited to her private and professional life. It’s easy for her to muster the necessary discipline for her diet, weight and fluid control because she has done it all her life. She was diagnosed with kidney disease when she was just seven years old. From the age of twelve, she underwent various forms of dialysis until receiving a donor kidney when she was 18. She was able to live with it for 21 years. Now she is back on the transplant list. If you ask Paula Lourenço what she dreams of, she doesn’t have to think twice: “A safari in Africa would be great.”

Paula Lourenço
Thanks to home hemodialysis, she can
manage even long working days without any problem.

The treatment takes
up 90 minutes of his day

It was a shock, even though Pedro Monteiro had known for a long time that the day would eventually come: In February 2011, his kidney function deteriorated to the extent that he could no longer live without dialysis treatment. For the active 42-year-old, this was a frightening concept. Would he be able to carry on with his previous life? Going out with friends, traveling, sport?

Meanwhile, the engineer’s trade union employee from Porto leads a life that does not differ significantly from before undergoing dialysis. He still goes to work every day, and regularly works out at the gym or jogs along the banks of the Douro river in his spare time.

Pedro Monteiro is a peritoneal dialysis patient. With this form of dialysis, the peritoneum is used to rid the blood of toxins and remove water from the body. The peritoneum is a natural filter membrane. When a dialysis solution remains in the abdominal cavity for several hours, it collects urea, creatine, and other metabolic products that would otherwise be excreted by the kidney. Pedro Monteiro still has a slight residual renal function. “Fortunately,” he says, “otherwise peritoneal dialysis would not be a treatment option for me.”

“I chose peritoneal
dialysis because I
want to be free
and independent.”
Pedro Monteiro

Three times a day, Pedro Monteiro has to drain the old fluid and introduce new dialysis fluid via a catheter in his abdomen. He begins the first of these 30-minute treatments before breakfast. Then he gets his son, who is now six years old, ready for school. “In total, dialysis only takes up 90 minutes of my day,” reports Pedro Monteiro. That can be incorporated into his daily routine without any problem. “And I can still lead an independent life, which is very important to me,” he adds.

The biggest danger with peritoneal dialysis is the risk of infection. Although new bag systems and improved solutions have significantly reduced the number of complications, the catheter remains a potential gateway for bacteria. “Therefore, patients first have to learn how to carry out the treatment correctly and carefully,” says Susana Rios who supports dialysis patients for Fresenius Medical Care in Porto. Pedro Monteiro was also trained by her. “But for an independent person like him, that wasn’t a problem,” she praises him.

Home dialysis patient Pedro Monteiro
together with his nurse Susana Rios (left)
and Susana Gomes, Communication Department
from Fresenius Medical Care Portugal.

One of the few real disadvantages of peritoneal dialysis for Pedro Monteiro is that he can no longer play in the pool with his son. He is not allowed to go swimming any more because of the catheter. On the other hand, he is much more mobile than he would be with other treatment options. At the end of 2013, he wants to fly to Rio de Janeiro with his wife and son to celebrate his wife’s 40th birthday. Thanks to peritoneal dialysis, that wish can come true.

Pedro Monteiro
With peritoneal dialysis, he is
still fit for sport and work.
Three times a day, Pedro Monteiro
has to connect the bags for the
dialysis solution to his abdominal catheter.
The engineer’s trade union
employee lives with his son and his
wife in Porto.

Dialysis treatment
while you sleep

Long before Liberta Brandão needed renal replacement therapy, she already associated the word dialysis with dread and a particular burden. Her sister had been a dialysis patient for a long time, before receiving a kidney transplant. “After treatment in the clinic, she felt unwell and was always frustrated at the time,” recalls the 74-year-old. When Liberta Brandão found out six years ago that she, too, was in need of such treatment, she was devastated. When presented with her options, she chose peritoneal dialysis – partly to avoid having to go to a clinic for treatment.

“I am always busy, always doing something,” Liberta Brandão describes herself. She mostly enjoys looking after her family. At the weekend, she often has both her sons with their wives and children over to visit. Then she cooks for everyone and indulges her three grandchildren in particular. “The only thing I want out of life is to stay healthy enough so that I can keep looking after my family,” she says, because without having them around her, she would feel lonely.

But Liberta Brandão is not quite so alone, because she has the support of her husband, to whom she has been married for 47 years. Even though he himself is ill and has been through chemotherapy, he helps her as best he can. Above all, he is her right-hand man for dialysis.

“I can continue
to support my family
and cook for
my grandchildren.”
Liberta Brandão

After being treated for a year with manual peritoneal dialysis, Liberta Brandão changed to automated peritoneal dialysis. With this form of treatment, a special machine called a cycler changes the dialysis solution. It means that patients no longer need to deal with different bags. In addition to lowering the risk of infection, automated peritoneal dialysis has an extremely practical advantage: Patients can undergo treatment during the night while they sleep.

The cycler for automated peritoneal dialysis is monitored
by Liberta Brandão’s husband Henrique.

Although Liberta Brandão has to dialyze twice during the day in addition to this nighttime session, it is still a distinct advantage compared to manual peritoneal dialysis, which she had to carry out every four hours. “I was only able to choose this type of dialysis because my husband is always by my side,” she concedes. He has found out all about the technology, learned how to operate the cycler, and now monitors it.

For Liberta Brandão, the longer breaks between treatments are important. They give her the freedom she needs to do her household chores and pursue her hobbies. “Today, I can do everything I used to do before, just a little slower,” she says, summing up her life with dialysis.

Liberta Brandão
Thanks to automated peritoneal dialysis, the
pensioner still has enough time for her grandchildren.
Liberta Brandão is happiest when
surrounded by her family.