Many patients with Alport syndrome will face decisions about life-sustaining treatment and the more we know about those treatment options, the better we will be able to determine the best choice for ourselves and our family.
In 1974, Janine Diebel became a Registered Nurse and learned she has X-Linked Alport syndrome. After three years of working in critical care, Janine was offered a position in a dialysis unit where she learned much more about End Stage Renal Disease (ESRD) and treatment options. She continued to work in the field until her retirement last September. Below she explains the various dialysis options.
Why Do People Need Dialysis?
A healthy kidney does an amazing job of filtering waste products out of blood, eliminating extra fluid, balancing chemicals like sodium and producing certain hormones that help produce red blood cells and support bone health. As our kidney function declines, we need to find another way to provide our bodies with these same functions. Dialysis can help. There are two types of dialysis: hemodialysis and peritoneal dialysis.
In hemodialysis, our blood passes through the fibers in an artificial kidney or dialyzer. These tiny hollow fibers allow waste and certain chemicals to migrate out of our blood, through the membrane of the fibers and into the solution that bathes the fibers within the plastic housing of the dialyzer. In addition, extra fluid can also be drawn off. Most people receiving hemodialysis treatments are scheduled in a clinic setting three days each week for about 4 hours each treatment. Registered Nurses and Dialysis Technicians are trained to initiate the treatment by placing two needles in a fistula, which is a surgically created modification of blood vessels, usually in your arm. The blood is drawn off with one needle and the cleaned blood is returned by the second needle. Some people receiving hemodialysis are trained with a partner, like their spouse or adult child, to perform this intermittent treatment in their home. In addition, there is a hybrid method of hemodialysis that is prescribed as daily short treatments also performed by the patient with a partner in the home.
Peritoneal Dialysis also cleans the blood and moves extra fluid out of the body but instead of needles in a fistula, this method uses the blood vessels in the abdominal lining (peritoneum). A small tube is surgically placed in your abdominal wall through which a special solution is instilled at intervals, left in place for a period of hours, then drained back out through the same little tube into a sterile collection bag which is then discarded. During the time the fluid is in your abdominal cavity, the blood vessels in the abdominal lining function as the filter drawing waste and extra fluid out of the blood in those abdominal vessels. Peritoneal dialysis is performed independently at home throughout the day using an IV pole and dialysis solution bags or by using an electronic cycler that allows the intervals to be managed while you sleep. There are fewer medications and fewer dietary restrictions for most renal patients on peritoneal dialysis.
Which is the best option for me?
There are many factors that will influence your decision about which treatment option is best. Your nephrology team can provide you with more detailed information about each option and can answer questions you may have as you gather information. The National Institutes of Health (NIH) can provide you with more detail so you can be your own best advocate as you consider how to receive dialysis.
Kidney Failure: Choosing a Treatment That’s Right for You from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Failing Kidneys and Different Treatment Options video from Doc Mike Evans