By Jack Reynolds, DPC Board Member
I have survived on in-center hemodialysis for the last 45 years. I have also received Medicare for all those years to pay for most of my dialysis and other medical needs. I currently reside outside the village of Palmyra, Iowa. One of the first group of Patient Ambassadors to advocate in Washington, D.C. in 2005, I have visited Capitol Hill many times since. Because of the cost, time and effort it takes to keep a kidney patient healthy, I feel that it is important to be aware of issues and legislation that can impact our choices of treatment modalities, drugs or medical insurances.
Kidney replacement therapy. Those three words are summed up in one word for almost a half a million people in the United States. That word is dialysis, and many kidney citizens undergo their kidney therapy in an in-center clinic setting—typically three times a week for three to four hours. For myself, this regimen of treatment has been going on for more than 45 years. When my kidneys failed in 1974—due to complications from a crushed pelvis suffered in childhood—there was only one hospital in Des Moines, Iowa that offered dialysis and no private clinics at all. Currently, the greater metro area of Des Moines supports nine dialysis facilities with a patient population of around 500.
In the old days, even if the number of facilities were the same, they would have had to operate 24 hours a day to make sure everyone got treatment due to the fact that it took an hour or more to reset, sterilize and string the dialysis machine for the next customer. Modern dialysis machines, along with high flux dialyzers, allow patients to remove excess fluid and urea waste products with less adverse side effects such as cramping and nausea. However, although patients tend to be healthier overall, treatment times have not decreased substantially.
Dialysis citizens are more likely to live somewhat longer now, and in my opinion, have a lot more leeway in their adherence to the renal diet. Development and improvement of both oral and intravenous drugs have made it possible for patients to maintain higher hemoglobin values, ward off bone disease and improve their overall health while living with organ failure.
Modern dialysis providers provide educational materials on various modalities of dialysis, kidney transplantation, diet, and even help in setting up dialysis appointments for trips and vacations. Many people have found that doing dialysis at home has improved their physical well-being and provided a more liberal diet, but the trade-off is having to dialyze much more frequently, although for less time per treatment.
Problems with in-center dialysis facilities include under-staffing, as well as nephrologists, dietitians and social workers who are responsible for multiple facilities. Another issue that is often overlooked is reliable transportation for kidney clients, many of whom require wheelchairs or are otherwise handicapped. As I live in a small town outside of the metro area, I have been fortunate to be able to drive myself to treatments. There is nothing like driving home in an Iowa snowstorm after dialysis when I am usually quite fatigued!
As a long time kidney advocate and Board member of Dialysis Patient Citizens, I have found it helpful to look past the weekly grind of my kidney sessions and take time to educate myself on issues and legislation that can affect thousands of kidney citizens. I find understanding the issues and advocating for more effective policies to be helpful in combating the solitude and frustration that can so often hamper the lives of people who require this lifesaving, but severely demanding therapy. If I have learned anything, however, over these many years as a dialysis citizen, it is that if you do not do dialysis well, then it is likely that you will not do anything well. Stay healthy and keep learning!