Home Dialysis Update: Research: Is "home" the right modality choice?
From February 2009


For kidney disease patients who need to undergo dialysis, modality choice can play a factor in survival, according to a study conducted by Australian researchers and appearing in the January 2009 issue of the Journal of the American Society Nephrology. The findings indicate that certain patient characteristics should be factored into decisions on whether to choose in-center or home therapy, hemodialysis, or peritoneal dialysis.

While both dialysis procedures are effective treatments for kidney disease, it is not clear which is best for prolonging patients' survival. Previous research on this topic has produced conflicting results.

In the United States, peritoneal dialysis is used by less than 10% of the dialysis population, usually in younger and healthier patients. In contrast, in Australia and New Zealand, up to 40% of dialysis patients receive peritoneal dialysis, making these countries potentially better regions for conducting studies that compare outcomes from HD and PD.





To compare the survival rates between patients receiving HD and those receiving PD, Stephen McDonald, MD, of the Queen Elizabeth Hospital in Adelaide, Australia, and his colleagues examined data from 25,287 patients in the Australia and New Zealand Dialysis and Transplant Registry who were still receiving dialysis 90 days after entry in the registry.

The researchers found that death rates were significantly lower during the 90 to 365 day period of the study among those being treated with PD at day 90. However, this effect varied depending on patients' age and health. Younger patients (<60 years) without other medical conditions had a survival advantage with peritoneal treatment, but other groups did not. Also, after 12 months, the use of PD at day 90 was associated with significantly increased mortality. This indicates that the results change over time: while PD might give a survival advantage to some patients in the short term, in the long term it increases patients' risk of dying compared with HD.

"Our data suggest caution in the use of peritoneal dialysis in many patients, particularly when this therapy is continued beyond one to two years," the authors wrote. However, the researchers noted that their observational study has some inherent limitations, and randomized clinical trials are needed to definitively determine which type of dialysis treatment patients should receive.





Patient perspective: There's no place like home

 By Miriam Lippel Blum

Adjusting to life on dialysis is never easy, no matter which modality choice - peritoneal dialysis or hemodialysis--you make. For me, the benefits of home-centered modalities far outweigh the in-center model. Being able to be in charge of treatments that are tailored to my needs allow me a sense of control, and gives me the freedom, flexibility, and the quality of life I did not have with in-center treatments.

I have been on dialysis since 1994. I spent six years on peritoneal dialysis (PD), six years on in-center hemodialysis (HD), and now the past two-plus years on home hemodialysis (HHD). My kidneys failed when I was 34 after a misdiagnosed allergic reaction to medication caused interstitial nephritis. In a normal person, this inflammation would have been the start of serious kidney damage, but for me, a type 1 diabetic from the age of 10 with already compromised kidneys, it was the death knell of my kidney function.

When I was 28, my nephrologist mentioned that it was possible that some time in the future I might need dialysis. I knew very little about it, so I decided to learn as much as I could, see what it was all about, and meet people who were doing it. I went to a medical library and read all I could. Then I set up meetings at an in-center HD clinic and an outpatient PD clinic, speaking to patients on each modality. There was no question in my mind that after seeing all the options, I would choose to be on PD.

The people I met on PD seemed to have active lives: they worked, they traveled, and they looked much healthier than the in-center folks. They were in charge of their own treatments at home and had more flexibility than those on traditional HD. I was a busy graduate student in Los Angeles at the time, and I couldn't imagine a life with the kind of restrictions HD would impose.

So, when my kidneys actually did fail six years later, I knew what I wanted. Luckily, there was no medical reason prohibiting me from using PD, so I had a Tenchkoff catheter installed. The training was not difficult. I learned quickly how to do the dialysate exchanges safely; administer heparin and insulin into the fluid; take erythropoietin injections; and take care of my catheter. I chose to do PD manually four times a day. I was told it would be better for my cardiac status and I also didn't want to be attached to a machine for hours. I even did exchanges in my office at work during my lunch hour. PD did not preclude me from continuing my job as before.

It did take time to adjust to what my body felt and looked like with 2.5 liters of dialysate in my abdomen. I'm not a big person, so I looked pregnant, and it was difficult when people asked me when the baby was due. I even had to buy slacks at a maternity store to find ones that would fit right. But I viewed it all as the price I had to pay for life, so my husband and I learned to live with the changes and difficulties it brought.

 Success with any type of home dialysis modality really depends on one's attitude about it and one's willingness to accept responsibility for their own care. Having knowledgeable and caring professionals to call upon when you need assistance and offer encouragement helps, as does family support. But in the end, it's mostly up to you. I did what was necessary to take care of myself, but I did not define my life entirely by my disease. When not dealing with medical issues, I lived life as fully as possible. While on PD, I worked more than 40 hours per week at my job, sang in a choir, did aerobic dance exercise three times a week, and my husband and I took trips to Maui, Utah, South Carolina, Arizona, and lots of places in California, too. It just took some careful planning.  I made arrangements for shipment of dialysis fluid to hotels, packed all the medications and supplies necessary for the trip, arranged for a backup unit in case of problems, and brought medical records, just in case.  

Unfortunately, after six years, I developed leaky hernias along an incision from a previous surgery. My medical situation at the time precluded surgical repair and my only dialysis choice was conventional in-center HD. Home hemodialysis was never mentioned as an option, and it was not even available then in Tucson, Ariz., where my husband and I had moved.

I had also spent five years on the transplant list, never got a match, and then my cardiac status precluded transplant as an option. So, if I were to continue living, I would have to get used to a life forever on in-center HD. This was extremely difficult for me.

On a physical level, I never felt as well as I did on PD. The two-to-three day accumulations of toxins and fluids followed by three-hour removal sessions were very taxing to my body. The dialysis process stimulated a great deal of inflammation in my vascular system, too, causing major cardiac and circulation issues in short order. The dietary and fluid intake restrictions were much stricter than that while I was on PD, and I had to go back to multiple daily insulin injections.

The center's scheduling was also very rigid, restricting my life even more. Trying to change a time or date to celebrate holidays, attend a concert or for that matter any other social event was always a tremendous hassle. But the worst thing for me was the time in the center itself. I never felt safe.

I was used to being in control of my own care and found that I frequently was more aware and careful than most of the technicians in whose hands I was now entrusted. Depending on the luck of the schedule, I could be faced with competent personnel or with one who was not. I experienced and witnessed numerous errors. One example was the night a technician almost injected me with 10 times the amount of heparin that was prescribed. I caught the error at the last second and had to scream to get her to stop. Had I been a less educated patient, I would have likely died.

In my six years there, I observed many contamination and infection issues; understaffing that created rushed and stressed personnel; frequent staff turnover that created more and more less-experienced, inadequately-trained or under-supervised technicians.

Not a week went by where I didn't witness paramedics treating a fellow patient in crisis while in treatment. Sometimes the people returned and often, not. The tension wore on me and I dreaded being there.

I read a number of nephrology in-dustry news publications and Web sites and saw that HHD was becoming an available modality. There was developing evidence that short daily HD seemed to have very good results in terms of adequacy. I started asking the nurses and management at my Tucson center if this would be an option offered there. They began to explore the issue, but it was clearly going to be a long time before they were ready to have a viable program. Meanwhile, I got on the waiting list for HHD training being offered at a clinic in Scottsdale, Ariz. about a two-hour drive north from my home.

After a year of waiting, my husband and I started training at the DaVita clinic in Scottsdale. We were blessed to find a wonderful dialysis technician in Tucson who had just left the in-center HD world and was willing to work with us. We hired her and she trained with us. Without her, HHD would have been impossible. My husband, because of work, would not have been a viable treatment care partner. We were fortunate to be able to pay for her services. Many cannot afford this and Medicare will not pay for a hired assistant.

We moved to Scottsdale for five weeks to avoid the daily commute. It was financially draining, but we considered it an investment in my life and health. The training was intense. My husband, our technician, and I learned all the ins and outs of how to safely run the NxStage System One machine; how to do buttonhole cannulation; how to draw, process, and mail out needed blood tests; how to chart everything appropriately and deal with emergency situations. The nurse educators were tolerant, friendly, helpful-everything one would expect from a true professional. We also met other people doing HHD at the center. Some were trainees like us and others were more experienced HHD users who were at the clinic while their care partners were on vacation. All were very committed to HHD and said they would not go back to in-center HD if they had a choice.

After five weeks, we were home with our machine-set up to do it all ourselves. The nurses are always available by phone for consultation if there's a problem, as are NxStage personnel. My husband helps me on Sundays and our technician does the weekdays. They set up the machine and help me connect to it, but I do my own needle cannulation and monitoring during the dialysis sessions.

Of course, there have been frustrations and disappointments along the way. I had hoped that my dialysis sessions would be two to three hours long but it turned out that I need four hours to feel good, and that is how long I dialyze six days a week. The NxStage machine has had some occasional problems and issues we did not anticipate, but for the most part it has been reliable. Those problems have included faulty tubing and leaky cartridges and a couple of electronic glitches.  Although the NxStage literature says the machine is portable, it weighs a hefty 75 lbs. and is about the size of a 13-in TV set. That has limited travel for us. Another issue for me is the machine's noise and the fact that every 30 minutes or so it goes through self-checks at which time I must do and record blood pressure and vital signs.  It interrupts my concentration and has made serious work difficult for me to maintain.

We had hoped for some reimbursement from catastrophic care insurance for the costs of the technician, but were denied because we didn't use an agency to hire the technician. We are appealing that decision. For those considering HHD, some insurance companies will reimburse, so it is wise to check with them first.

Despite the discomfort and difficulties, I have made a life for myself on HHD. I am grateful to dialyze in a clean quiet room in my home where I am not worried about exposure to others' infections and where the person who is helping me is a well-trained and competent partner.  Sometimes the simple comforts of life mean a great deal when one is doing dialysis.  I can have a friend over to spend time with while I dialyze, eat a light lunch, read, watch television, listen to music, talk on the phone, nap, or work on my computer. I can adjust the timing of my sessions to meet my needs and, most importantly, I am also physically much better than when I was on in-center HD. Because I dialyze six days a week, I have less fluid to remove and less toxins in my body; there is less fluctuation of blood chemistry and I am not so exhausted. I have had no hospitalizations in the two years I have been at home. My skin color became less sallow and I heal faster. I have the energy to exercise at a gym six days a week and I am able to maintain a full day's activity.  I can enjoy my free non-dialysis time even more because I feel so much better. The positive impact of HHD on my health is evident to all who know me.  

Every dialysis nurse and technician I have ever spoken to regarding HHD or PD has said that if they had to be on dialysis, they would choose a self-care modality, too. I think that speaks volumes.


Author  bio: Ms. Lippel Blum is a freelance writer and poet, based in Tucson, Ariz. She currently suffers from CKD and has been dialyzing at her home the past two years.



 First NxStage patients celebrate five-year anniversary

NxStage Medical, Inc. reported last month that a group of its first patients are celebrating their five-year anniversary of home hemodialysis treatment with the NxStage System dialysis machine.

Each of the four patients arrived at the decision to try NxStage at various stages in their treatment. All four patients are followed by Satellite WellBound Centers, an NxStage partner that established the first program in NxStage's IDE clinical study in 2003. The patients--Craig, Everett, Carl and Susan--began training with the NxStage System One on December 8, 2003.

Carl, who was diagnosed with kidney failure in 1996, said in-center dialysis had been a physically grueling as well as intensely time-consuming process. "After starting on NxStage, I felt like a new person compared to when I was doing in-center hemo," Carl said.
 
Following two failed kidney transplants, Everett relied upon in-center dialysis treatments that lasted anywhere from two to three and a half hours. Everett now does his hemodialysis at home six times a week. "I work treatments into my life, not the other way around," he said.

Craig has been dialysis-dependent since he was 19. When he heard about a new portable dialysis therapy, "I bugged my doctor for a year, incessantly, until it was available," he said. In December 2003, he started training on NxStage. Craig has been able to return to work part-time, exercise more often and pursue his passion of camping and traveling.

When Susan's kidneys failed, she was forced to quit her job and go on permanent disability. After one treatment on the NxStage System One, she said she recognized a difference in the way she felt. Just short of four years into her treatment with NxStage, Susan received a kidney transplant. Susan said NxStage System One treatments helped her body feel healthy enough to sustain a transplanted kidney.