This Is Dialysis

I have been on dialysis for five years. Although the name and ownership of the unit has changed a couple of times, I’ve remained at that unit for the five years. People, who haven’t experienced dialysis first hand, meaning actually going through the process of a dialysis treatment, don’t really know or understand what that process actually consists of. To be fair, a lot of people who are going through the process don’t understand the medical specifics of dialysis treatments. We know that we are there to get our blood clean and to save our lives.

I guess you could look at dialysis like it’s an equation. Dialysis = Life. It looks simple on paper. I’m sure it looks simple to people who walk through a unit and see the patients sitting in chairs, watching television or being on the Internet, as needles and tubing attach them to a machine. In actuality, there is nothing simple about dialysis. It can be complicated, painful, difficult and scary. For some patients, dialysis is giving them hope and saving their lives, for others, it’s stealing their hope, their modesty, parts of who they are and even their health. There’s that equation again: Dialysis = Life Changing.  It’s prolonging your life but at the same time, can make you sick. There is no exact science when it comes to dialysis.

So to be a dialysis patient is not an easy thing. As with any chronic illness there are so many things you can’t control, the flare-ups, the blood work, the side effects of medications, etc. The things you can’t control are usually the things that many of us find the most frustrating.

For the past few months, I’ve been feeling frustration and anxiety in obtaining my dialysis. This is something that has been bothering me a great deal because I am one of those patients that really understands the purpose of dialysis and I have never missed a day in my 5 years. So to feel stress and anxiety before I even walk into the building where my unit is housed has unnerved me. I just couldn’t figure out what was causing me to feel this way until one day during a conversation with my husband. (I am fortunate enough to have a spouse that is able to spend a great deal of time with me as I undergo my dialysis, so he is familiar with the surroundings.)

In our conversation, my husband mentioned that the atmosphere at dialysis seemed different. As he continued explaining how he thought the atmosphere had changed, I immediately knew where my frustration and anxiety stemmed from. Whereas there was once a relaxed, comfortable feeling between staff and patients, I now feel a tension and nervousness, between them. It's like that elephant in the room that no one acknowledges is there.

I would imagine that the field of dialysis has a high staff turnover. I’ve seen quite a few Techs come and go. Any dialysis patient will tell you that Techs are the backbone of dialysis and it’s always hard when a skilled caring Tech leaves a unit. All dialysis patients know the feeling of having a Tech who “knows your access.” When you are lucky enough to have a Tech who knows your graft or fistula and can make you feel almost or no pain, you don’t want to lose that Tech. And for that skilled person to also have a way about them that makes you feel like you’re amongst friends instead of in  a cold medical facility, is an added bonus. Lately it seems as though my unit has experienced an exceptionally high turnover, which causes me anxiety and makes me wonder what is going on in a place that is like my second home.

We patients are never told what has happened to “our skilled Tech(s). They are there today (or for years) and gone tomorrow. I realize that patients have no say in the hiring/firing or quitting/transferring process. But it’s hard to be “tied” to a chair, front and center and  be out of the “loop.”

ESRD=End Stage Renal Disease. For some patients, dialysis is the end stage of their lives. When a person reaches this point in their lives, the people that they count on both medically and emotionally become very important to them. To be left in the dark about what is going on, causes wariness among patients.

Although patients only mean money to a corporation specializing in dialysis/dialysis products, I wish that corporations would be interested enough to include us in one of the most important parts of our care. We (patients) are always reminded about the quality of care we receive and how important it is to the corporation. Yet, in all the time that I’ve been at my unit, I have never had a Corporate Representative visit me and ask me my thoughts on anything related to the unit and the people they employ. I am baffled by that fact, especially since they are making so much money off of my disease.

If ever given the opportunity to speak with one of the Reps who so desperately want to give me “Ultra Care,” one thing that I’d mention is that the care we all need and deserve, should go beyond medical. We need to feel like we’re part of the whole process and that our voices should be heard.

My Story

I began dialysis on January 3, 2005. It wasn’t the way that I had planned on ringing in the New Year but when they say you have to go on dialysis, it is more than a suggestion. It’s been a little more than three years now and sometimes it feels like it’s been forever. But my life actually changed in the fall of 2004.






Prior to starting dialysis, I was a wife and mother and one of those college students who go back to school later in life to get their degree. I was also a caregiver to my mother who was a dialysis patient. I was a very busy person but still managed to graduate with a 3.7 college GPA. I was looking forward to graduation and finding a job in my field. At the time I was studying business and I was ready to make and contribute money to my household and pay off that mountain of student loans.



There were days when I felt tired, but as I mentioned, I had a lot of things going on. I had some high blood pressure issues but was on medication and overall, although I didn’t feel great, I thought I was just worn out. One day during a regular doctor’s visit, my doctor began questioning me about the kidney disease that was hereditary in my family, PKD (or Polycystic Kidney Disease). I think right at that moment, before I even saw the nephrologist; I knew that I was going to need to start dialysis.



In August of 2004, after seeing the nephrologist, I was referred to a surgeon and I was given an appointment to begin the process of dialysis. I had a graft put into my arm and within four months, I began dialysis. People usually go on dialysis due to their kidneys shutting down and other health issues such as diabetes, and high blood pressure. The National Kidney Foundation estimates that about 20 million adults in the U.S. have some degree of chronic kidney disease.



As I mentioned, Polycystic Kidney Disease is the name of the disease that I have. My grandfather, my mother and two of my uncles all suffered from this disease and were on dialysis. And like myself, I have an uncle that is currently on dialysis and at the same unit that I am at. I have lost many family members to PKD but I know that with the help of dialysis, years were also added to their lives.



Dialysis not only saves my life but it changed my life as well. Of course there’s the negative aspects of it: being poked with needles, having to watch my fluid intake, cramps, cramps and more cramps as well as sitting in the same spot for three and a half hours, three days a week. There’s no question that it’s not an easy thing to go through but dialysis patients find a strength and resilience that others may never experience. I have immense respect for all dialysis patients because more often than not, they are dealing with additional health issues.



At my dialysis unit the patients that I have met are people that are smart and funny and lead interesting lives. My husband has struck up a friendship with a patient, who in his younger years actually shook Babe Ruth’s hand. I find that fascinating. There are so many faces of dialysis. They are mothers, fathers, grandparents, sons, daughters, aunts and uncles. They’re very kind, helpful and caring people, who, like me, lived productive, busy lives before their lives changed due to kidney disease.



The actual treatment of dialysis is a joint effort. It takes the cooperation of caregivers, the people that provide transportation and the staff, both on and off the floor. The dialysis staff is like a family and for many of us, we see these people more than we see our friends and relatives. I can’t say enough about the dialysis techs and nurses. They are true caregivers and I believe that they understand that we are people and not just lab work, blood pressures and Kt over V’s.







To sum up my experience having and dealing with kidney disease, it has made me look at my health and myself in a different way. I now work at taking better care of myself. I also appreciate my life and the people in it more than I ever have before and I’ve met people that I probably would have never met in my other life. And yes, I think of my life in two parts, BK (before kidney disease) and now. I expect my life will change again when I receive a kidney transplant.



For now though, I am educating myself on my disease and dialysis because it’s important to be aware of what is happening to my body. I see myself as a positive person and one day, in my reading about dialysis, I came across something that I decided to adopt as my motto. It’s a phrase that I think should hang on the wall in every dialysis unit. It simply states, “Don’t live to dialyze, dialyze to live!”