As a kidney patient or a chronically ill person, I can attest to the fact that you are constantly looking for someone to talk to. I find myself searching for anyone who fully understands what I am going through and who has a willing ear to listen to my concerns.
Well, when I learned that I was eventually going to face “The Big D,” or dialysis as I wish it were called, I began a search for somewhere I could voice my concerns and fears and not worry that I am getting some textbook answer of what I should be feeling.
Following a web search, I ran across a website called “I Hate Dialysis.” Initially, I thought maybe this was just somewhere for people to complain about their experiences. I just felt that this probably wasn’t a place for me. I wasn’t looking for a place to complain. I just wanted to find answers to my overwhelming thoughts that had begun to circle my mind. I wanted to know when I would actually start dialysis. I wanted to know what I was going to feel like when I started, and how in the world would I ever get used to those big needles they stick in my arm.
With hesitation, I decided to click onto this website, and I was pleasantly surprised to find a home for me and a bunch of other frightened patients. I found it so rewarding just for someone to hear me. I could talk about how my friends and family try to understand, but don’t really get what I am going through.
I have always tried to stay positive about my experiences, but there are times where dialysis can really feel like a prison sentence, and the times where I feel the most confined is when I have to refrain from drinking fluids. Imagine not being able to pick up a glass of water when you really feel the thirst. It forces you to think about every bit of fluid in front of you. From the Big Gulp drinks that people buy to the cups of coffee that people consume on a daily basis. It will all make you go mad since you know that if you drink more than a certain amount, the scale is going to tell on you.
I know I fail this test all the time, but I do find comfort in talking to other patients who have faced those same battles and won. I like talking to those who can give me examples of their own successful battles with excess water.
Going to “I Hate Dialysis” has also given me a route to see how other patents deal with waiting for a transplant. It can be a long wait for many people, including me. My transplant coordinator told me that I have already accrued over 700 days on the list, and a year and a half of that time has been on dialysis itself.
Trust me! I would love more than anything not to know what dialysis is or to know what fluid and dietary restrictions are, but it is a part of my current reality. Therefore, I am just glad that there is a place I can go to remind myself, “I am not alone, and I will survive this.”
Katie Holland can be reached by email at email@example.com.