My Experience with Daily Dialysis

I am very happy to be here today. This has been a fascinating meeting. Knowing about all the research being done in the field of dialysis, kidney disease, and transplants is very heartening. I wish all dialysis patients could know about the proceedings of this meeting and others like it because it would give us hope for the future. I would like to talk to you about my experiences with daily dialysis, which has had a tremendously positive impact on my life. Until September 1999, I was dialyzing at home, three times a week, for 4.5 hours each time. For the 11 years I had been on dialysis, I was considered a good patient—I was compliant with my diet and medications, I never missed a run, and almost never shortened runs. My labs were good, I was able to keep my job, and I was maintaining my daily routine. I was told that I was doing “great” and I accepted my current condition as the best it would get. However, dialysis, my job, and taking care of my daily needs was the extent of my life. I didn’t have time or energy for any sort of social life or recreation. Daily dialysis has allowed me to raise my expectations far beyond what I had thought was possible. Last September I became a subject in the study of the Aksys machine (Aksys Ltd, Lincolnshire, IL), which makes daily dialysis possible. Since last September I have been dialyzing 6 days per week, for 2.5 hours each time. It has made a tremendous difference in my life in many ways. (1) I have more energy than I’ve had since starting dialysis 11 years ago. My hematocrit has stayed high and I no longer feel fatigued. At times I feel tired from working or playing hard, but I no longer have that dialysis “fatigue”—having to drag out of bed in the morning, or spend much of my free time resting. (2) My erythropoietin (EPO) use has dropped from 30,000 units per week to less than 5,000 units. My hematocrit is still in the upper 30s and the EPO dose is still being reduced every few weeks. (3) I have not felt nauseated even once since starting daily dialysis. On conventional dialysis, I often had a queasy stomach and I used to vomit at least a few times a week. The worst times were the end of the long “weekend,” but the past year has been nausea-free. It’s been a great relief. (4) I sleep much better. I fall asleep more quickly and sleep more soundly and deeply. Getting a good night’s sleep is so important to me—it changes my entire outlook on life. (5) I have been able to loosen up on my dietary restrictions. I can eat more potassium and phosphorus (after all, I’m dialyzing in a couple of hours). Another positive effect is that my fluid intake has increased which makes me much happier. (6) My dialysis treatments are virtually problem-free. Since starting daily dialysis, I have never once cramped during a run—even with large fluid gains. I have never “crashed” from low blood pressure, and because I dialyze for only 2.5 hours, the runs pass quickly. My arm doesn’t get sore from staying in the same position for 4.5 hours and basically, I no longer face treatments with dread and fear. (7) After my runs I am full of energy. Before, I would feel “washed out” for many hours after the run. But now, after only a few minutes, I can go about my business feeling good. In addition to physical changes, there have also been changes in my psychological condition. My friends tell me that I am more cheerful and pleasant to be around, and I find that because of the loosened dietary and fluid restrictions, I no longer “obsess” about my food and drink. I used to spend a lot of time thinking about my next drink—worrying about it—feeling frustrated and thirsty all the time, but even though I still have to watch my intake, it’s no longer an obsession with me. It’s as if a giant burden has been lifted from me. There are “downsides” to daily dialysis. (1) For one thing, it is something you have to do every day! However, just as all dialysis patients adjusted their lives to the need for three treatments per week, I have found that I’ve adjusted fairly easily to a daily treatment schedule. I choose to dialyze in the evening, so I eat dinner and then spend the next few hours watching TV or reading while dialyzing. In fact it’s sort of nice to have that “rest time” after a busy day—I can be a “couch potato” and not feel guilty about wasting my time! (2) I think that the major “downside” to daily dialysis is the need for daily punctures. I admit, that is a major consideration, but I have been trying to use the “buttonhole” technique (using the same site all the time, creating a “tunnel” of scar tissue for the needle to slide into). Once the buttonholes have been established, punctures have been virtually painless and fairly easy. And again, just as we became used to the thrice weekly puncture, I’ve become adjusted to daily sticks. I really cannot stress what a difference daily dialysis has made in my life! Because of feeling better and having more energy, I have tackled large projects that I’ve been putting off for years. I’ve remodeled part of my house. I opened a small B&B, and I have the energy to clean and do laundry every day! I had the energy to plan and take a vacation to Hawaii, and I’m working more hours at my regular job. I’ve even found time to do some volunteer work, and I spend more time with friends and family. As I said, my expectations of what I can get out of life have been raised higher than before. I wish that all dialysis patients knew about the benefits of daily treatments—either short daily runs or the long daily nocturnal dialysis, which also sounds very beneficial. At the current time, Medicare will not pay for daily treatments, even though most studies show that overall, costs are lower because of decreased EPO and other drugs and fewer hospitalizations. Patients need to speak up and demand that Medicare look at the evidence and start offering daily dialysis as an option for those who want to do it. It will improve our health and our quality of life!