Focus on Fistulas:

“A well functioning dialysis access is the key to successful long-term dialysis.” I first heard this when I was a 21 yr old neophyte and my nephrologist was explaining his choice for the type of access I was going to receive. At the time I was feeling very fit and vigorous, but the blood tests showed highly elevated BUN and creatinine levels. - elevated to the point that it was decided that a gortex graft would be more expeditious and therefore more desirable. At that time I gave it very little thought because all I cared about was the end of my fledgling baseball career. Little did I know how big a part of my life my dialysis access would become!

When I was asked to write this article, I jumped at the chance because I really believe in the importance of knowing your access and how to keep it operating properly. But I must admit I found this concept difficult to write about. Vascular access technology has changed drastically in the 21 years since I started dialysis. There are so many choices and techniques to choose from. How do I cover all the options and choices in a useful manner? Should I interview professionals? Which materials should I use for my research? Then suddenly I realized, this is not about vascular accesses, this is an article about freedom and control. Freedom to decide what works for you and control over your overall dialysis treatment.

Over the years I have come to understand that dialysis works best when we have a measure of control over our dialysis and our lives. I gained this control in part due to the access I am currently using for dialysis. My current access is an AV (arterio-venous) fistula. This access replaced the first four accesses I had which were gortex grafts. All four gortex grafts were placed in my left arm and while they had the advantage of immediate usability, I found myself in the operating room far too often for my tastes. You see, although I was on dialysis, I still needed to indulge my two greatest passions - baseball and weightlifting. These two activities have kept me healthy both mentally and physically for the last 18 years. But I also had to live with the spectre of frequent declottings and graft revisions. This was due primarily to the drop in blood pressure caused by my active lifestyle. At least that was what I was told. I had begun to accept the reality of frequent declottings when my Nephrologist suggested an AV fistula. I was told that it would take some time to develop after it was created but that once developed, it would virtually eliminate the need for declotting surgery.

And it was true! In the last 8 years I have had zero revisions and zero declottings. I still check my access daily, but it is such a joy to know that I can pursue my passions without the fear that at any time I may have to report to the emergency room for a graft declotting procedure of some kind.

I want to stress that while I am so very happy with my fistula, this may not be the choice for you. There are many factors which go into the choice of dialysis access, but I firmly believe that the most important factor should be the wishes of a well-informed and knowledgeable patient who has all the facts. This process is the first step in being in control of your dialysis, a process which I hope will lead to you to learn to put in your own needles!

Self cannulation is a touchy subject in many units but as a patient who has been cannulating himself for 18 years I feel comfortable saying that it is the best decision I ever made. Self-cannulating is a skill which, once learned, will provide you with a significant measure of control over your day to day dialysis treatments. Ask your staff or following physician if you can self-cannulate.

To conclude, there are many options for receiving dialysis today including many types of vascular accesses and cannulating techniques. While I am thoroughly satisfied with my AV fistula, for the reasons previously stated, an AVF may not be for you. The choices you make should be well informed and should come after consulting your Nephrologist and treatment team. But ultimately your treatment choices are up to you and you have to live with them. So choose well and while you’re at it choose to live the best most productive life you can. Remember we are not defined by our illness, we are defined by how we live our lives!

[Phillip Cade is a Legislative Liaison for the Washington State Department of Social and Health Services, and a Patient Services Consultant to Northwest Renal Network.]