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.