IRENE HARPER

A patient/partner panel discussed “Home Dialysis: PD vs HD, Which I Prefer and Why.” George Harper, an 18-year home hemodialysis (HD) patient, presided over the session. Continuous ambulatory peritoneal dialysis (CAPD), home HD, and nocturnal home HD were the modalities presented by the 7 panelists.

Judy Weintraub, an adjunct associate professor of education at the University of Southern California, and President of the Los Angeles Chapter of AAKP (American Association of Kidney Patients), is in her 11th year doing CAPD, and in her 24th year as a dialysis patient. After her second failed transplant in the mid-1980s, she was feeling discouraged because she had viewed transplantation as a way out of the HD clinic. Judy began researching peritoneal dialysis (PD) with a long list of questions and visits to several PD units. The unit she selected was the one that was most open in answering her questions and had a 24-hour on-call nurse. After switching to CAPD in December 1987, Judy no longer required the frequent blood transfusions she needed on HD. She also cited the positive impact of dialyzing at home. Judy said that while she had had excellent nurses in-center, she had also had poor ones. Also, the in-center HD attitude was not very positive, because it focused more on what the patient cannot do. She said “At home, you know you are giving yourself the best possible treatment.” She views good education and 24-hour support as essential for successful home dialysis. The fact that she has never had peritonitis in her 11 years on CAPD certainly gives credibility to her views.

Linda VanPelt, a recently retired elementary school teacher from Duncan, South Carolina, has experienced both PD and home HD. After renal failure secondary to diabetes, Linda began CAPD, which she viewed as very flexible. It was easy to do PD, she could travel easily, supplies were delivered and stacked ready to use, and the record keeping was simple. But the amount of PD fluid needed for adequate dialysis could not be tolerated since it gave her gastroesophageal reflux. When her doctor told her she needed to change therapies, she wanted to know if she could do it at home. She said she needed control and wanted to care for herself. Linda states that she feels 100% better on HD than she did on PD. She dialyzes with a PermCath® because her fistula clotted shortly after beginning home HD. Dialyzing at home with one-on-one care is less stressful for Linda, and she feels better cared for. In addition, she enjoys the time she and her husband spend together while she is dialyzing. The main disadvantage of HD is that it is not as flexible, especially when traveling. It is sometimes hard to schedule dialysis at a unit when she is away from home. Also, she feels more dependent on a caregiver (her husband) than when she was on PD. But overall Linda is pleased with home HD because she feels her health is better. Joe VanPelt, Linda’s husband and care-giver, says it is rewarding to see Linda feeling better. “She watches me like a hawk, still the schoolteacher in charge,” he says with a chuckle. Joe describes their home HD relationship as a partnership and says they talk through problems together. To see that his wife feels well and is well cared for is Joe’s view of the role of caregiver.

A patient of many therapies, Howard Scott has experienced CAPD, continuous cycling peritoneal dialysis (CCPD), and transplantation since 1990, and began nocturnal home HD in January 1998. As a musician, he feels this therapy fits his lifestyle, and after 2 months on nightly HD, Howard began to feel better, to eat better, to walk better, and even to run. On PD he had little appetite, had nausea, and did not eat well. The biggest change, Howard states, is “I love life again. I feel good and am productive again. Every day is a good day.” His dialysis access is an indwelling catheter. After an initial adjustment period, Howard says dialyzing nightly does not interfere with his sleep. His list of medications has decreased significantly, and he is now taking only a small amount of blood pressure medication. Howard’s wife, Chris, trained for all of his therapies with him. She wants to be there for him and help him if he needs it. If he is happy with his therapy, so is she.

Another nocturnal home HD recipient, retired dentist Dr. Kenneth Bays from Pelham, Georgia, also praised this therapy. He views nocturnal home HD as less stressful than 4 hours’ of HD during the day, and says it is a more gentle treatment with fewer ups and downs. He now needs no blood pressure medication and eats and drinks what he wants. He uses a Teflon ^TM catheter with a removable stylet to access his AV graft. Dr. Bays feels that nocturnal home HD gives him control of his life.

George Harper, an 18-year home HD patient from Rome, Georgia, stated that he chose home HD because it would allow him to continue to work. Maintaining his job seemed the best way to keep his life together and avoid the drastic changes that disability retirement would bring. He feels that his wife Irene is the key to his success on home HD, and that he is lucky to have a dedicated and loyal spouse who has helped him dialyze for 18 years. He believes Medicare should fund coverage for a paid aide so more patients could benefit from home HD. George states that, of all the dialytic therapies, home HD offers the longest survival and best rehabilitation potential for a selected group of patients. He cites several advantages of home HD: (1) maintaining his normal routine at home; (2) having control of his treatment, which has resulted in quality treatment and avoidance of exposure to infectious diseases in clinics; (3) inserting his own dialysis needles, thus preserving his fistula for 18+ years; (4) arranging his dialysis schedule to suit his life, not the needs of a dialysis facility; and (5) traveling with dialysis in a recreational vehicle. “This freedom to travel has meant everything. It has given me a great sense of psychological freedom knowing that I can travel and vacation as I had done prior to ESRD,” George said. He urges the medical profession to direct more patients to home therapies, thus offering the best long-term outcome for a selected group of patients.

George’s wife Irene said the decision to help George dialyze at home was one of the hardest, but best, decisions she has ever made. She was fearful that she would make a mistake that would result in harm to George, but she believed that George would be better off dialyzing at home than in-center because it would enable him to continue working, which was important to him. She believed that if George were happier working, she too would be happier. “As time went on,” she said, “home HD became just a part of our routine.” George dialyzed while he did his usual after work activities, and they spent time together, one of the advantages of home HD to Irene. She considers the main advantages of home HD to be the sense that she is doing something to help George live a good life on dialysis, to help him be as well as possible, and that they still have their shared life together, of which dialysis is only a part. The main disadvantage of home HD, she says, is lack of a backup helper for George when she needs to be away. Irene stressed that talking with other home dialysis families is a real help in adjusting and coping with home dialysis, and she recommends support groups such as AAKP for meeting other people on dialysis, as well as for acquiring information through its quarterly publication, Renalife, and its annual conference.

Following the panel, a nurse commented that she had never been a big supporter of home HD, but after hearing this panel she had changed her mind. What could say more about the effectiveness of this panel of home dialysis patients and partners?