As Ed Strudwick’s nephrologist for every day of his remarkable 39 years and nine months on dialysis (Renal & Urology News, “The Hemodialysis Marathon Man,” October 2007) until his recent death from septicemia at age 71, I would like to revisit some of the valuable lessons that this experience has reinforced for me.
Remind your dialysis patients that compliance is key. Ed’s longevity was due to his full compliance with diet, medicine, scheduling, and follow-up.
If you have a compliant patient like Ed, you can almost expect long-term survival. We have about 190 patients currently on dialysis at Holy Name Medical Center, and I would approximate that 10% of them have been on hemodialysis for close to 10 or more years. We also have about 5% who have been on hemodialysis 15 to 29 years.
Patients do best when they embrace their new disease-driven lifestyle and accept what they have to do. Be sure they understand that they cannot be too careful. For example, as we all know, eating high potassium foods can be fatal. Ed realized this potential hazard and limited himself to one-half of a banana twice a week and totally avoided orange juice.
Staff diligence matters. Dialysis patients do not have much leeway in terms of how much they can cheat. Not uncommon in most dialysis centers, non-compliant patients can gain up to 15 pounds in the 48 hours between sessions.
This repeated behavior obviously diminishes their long-term survival. They might be able to get away with it occasionally, but the staff has to be very attentive to point out what they should or should not do while continually educating and encouraging them.
Nutritionists are key, as are the nurses involved with the care. Certainly Ed was down in the dumps on many occasions. The staff would bring it to the doctors’ attention and would try to help work through his issues, which I believe contributed to Ed’s will to survive. Patients really have two supportive teams: One is their family and friends, and the other is their professional team—the nephrologist, the nurse, the dietitian, the social worker.
Don’t lose the patient relationship. Today, we’re being encouraged to use electronic systems to record our patients’ visits. And what is happening is, physicians are losing personal contact. For example, I have seen young doctors take a patient’s history while keeping their eyes fixed on their computer as they input the data, only occasionally glancing at the patient. In this age of computerization, I hope we do not lose that personal eye-to-eye contact with the patient.
Talk to your patients and their families regularly, and try to stay engaged with them. Let the patient know that he or she can call you to discuss a problem. You have a social worker who can always help them through personal issues and family issues. Ed Strudwick had a personal rapport with the staff that made it less of a chore for him to come in three times a week, 156 times a year, for 39 years.
His main nurse, Karen, could tell you everything that was going on with his family, including his grandchildren. And when Ed reached his 30th year on dialysis, we marked the occasion by giving him and his wife tickets to a Broadway show and dinner at a New York City restaurant.
Encourage home dialysis. Home dialysis is the treatment of choice. Ed had a cadaver transplant in 1977, after about five years into his dialysis treatment. The testing between the donor and the recipient was not as sophisticated as it is now, and Ed had a very bad experience. He rejected the kidney before he ever got out of the hospital. We tried to send him back for another transplant, but he refused.
At that time, we had a large home hemodialysis program and we taught his wife how to do home hemodialysis. He was happy with that arrangement. He was able to get back to work as a carpenter and dialyze at home. He continued home dialysis for about 15 years and was transferred to the hospital unit when his wife had to get a fulltime job.
We do not have many home hemodialysis patients anymore, but now we have a large peritoneal dialysis program. The peritoneal dialysis patients prefer doing home peritoneal dialysis because the diet is less restrictive and they can drink more.
They are much more independent and they can organize their exchanges around their own personal schedules; the dialysis routine is much more flexible. The home peritoneal dialysis patient is better rehabilitated and treatment costs are less than in-center hemodialysis.
Give patients hope. I share the story of Ed Strudwick with patients who have CKD4 and CKD5 who are preparing for dialysis. Although transplantation is preferable for the appropriate candidates, the end stage kidney disease patient requiring dialysis needs hope that one can continue to lead a productive life. Ed walked two daughters down the aisle and lived to enjoy five grandchildren. At Ed’s early years in dialysis, no one ever expected this to happen.
Dr. Rigolosi is Director of the Regional Hemodialysis Center at Holy Name Medical Center in Teaneck, N.J. He is a member of the Renal & Urology News Editorial Advisory Board.