Empowered to do ‘what I want to do’ despite diabetic ESRD
Editor’s note: Lauren Gregg is a home hemodialysis patient from Ewing, N.J. and a competitive pool player for the American Pool Player’s Association. Empowerment is about facing obstacles in life and finding ways around—or over—them
My motto is “YOLO”—“You only live once.” Right now I’m completely content with my life. I smile at strangers and see silver linings rather than storm clouds wherever I look. But it hasn’t always been that way. I’m only 31 and I’ve had kidney disease for more than half of my life. I was diagnosed back in 1999, when I was just 14. I was put on medication to help regulate the pressure on my kidneys, and for 10 years or so it worked fairly well. I was so young when managing my kidney disease. It became part of my daily routine and I didn’t realize what it meant in the larger scheme of things. It was just, ‘I’ve got to take this medicine,’ and that’s it. It didn’t stop me from doing anything I wanted to do.
Still, my health was declining, and I was borderline diabetic for a long time. When I was 24 my creatinine level suddenly went from manageable to sky-high within a matter of weeks, and I was told I’d need dialysis to stay alive. In 2009, not long after I began dialysis at a hospital – based clinic three times a week, a new doctor took me off my diabetes medicine. For the first time in my life I felt completely powerless. I experienced a slew of side effects over the next two months. Little by little my eyesight started getting really blurry and in the end, I couldn’t see at all. Then I had a diabetic seizure. It was terrifying: first to have a kidney disorder and have to do dialysis three times a week. And then to not have any idea what was happening to me. While my vision returned with treatment and the other side effects quickly subsided as well, that feeling of powerlessness remained. After 4 ½ years of going to a hospital every Monday, Wednesday and Friday for dialysis, I was in a rut. I felt like I couldn’t do anything meaningful with my life.
A gift of a kidney
In 2012, I received a transplant. My life, I expected, was about to do a 180—I’d basically be cured! My uncle donated his kidney in what’s known as a kidney swap: he wasn’t a match for me, but he gave his kidney to someone he did match with, and in turn someone who matched with me gave me theirs. My new kidney worked perfectly fine for six months, and then my body started rejecting it. It felt like the end of the world; that my life was basically over. And so I went back on dialysis again. I’d always been a social person, but I withdrew.
Then one day last year a doctor said to me, “You know, Lauren, why don’t you see if you can do this yourself?” I wasn’t sure what he meant, and he explained that I could learn to do dialysis myself at home. “It will give you the option to have more freedom with your life,” he told me. The “f ” word really stuck in my head. It was what I needed to hear to kick start my life as I wanted to live it again. I was lucky that I live near Satellite WellBound in Mercer, N.J., since it’s one of the only dialysis centers in the region devoted to educating and overseeing patients who want to do home dialysis. WellBound’s training course usually runs for four to five weeks, but I attended for seven. Everything I needed to do came easily to me, except for poking myself with the needles—they’re big, 15 gauge! So I kept at it until I was completely comfortable using them. The Satellite nurse I’d worked with for all of those weeks came home with me and sat with me while I did my first solo treatment. It was a little nerve-wracking, but I pushed myself to do it without her help—and I did.
A new beginning on home dialysis
In the year and a half since beginning home dialysis, my life has changed dramatically. It has opened up. That notion of freedom the doctor tantalized me with is real. It’s like I’m Lauren again. Yes, I must dialyze five days a week, but I can choose the days and time. If I want to go to the beach, I can go to the beach and then do my treatment after I come home. If I have a date, I can arrange my dialysis treatment around going out to dinner or a movie—and not the other way around. And I can do one of my favorite things every Thursday—meet up with my billiards team to play competitively in a local league.
Just a couple of weeks after I finished my training at Satellite WellBound, I went to Florida and stayed for 11 days. A week later I flew to Las Vegas for a pool tournament in which all my expenses were paid. You’ll often find me in New York visiting family who live there. It’s easy: I just take my portable dialysis machine with me and go.
Not long ago, a local newspaper wrote a story about me—the first time I’ve spoken publicly about my experience with kidney disease. In the months since, I’ve had numerous people in my town tell me, ‘Lauren, you’re a motivation to so many people!’ They’ll often say, perhaps a bit surprised, that I certainly don’t look sick, and that they’re inspired by the fact that I don’t let my health struggles get me down. I tell them the truth: that I don’t feel like ‘a sick person,’ and that I’m in a great place in my life. And I also tell them that it hasn’t always been easy.
Rack ‘em up
These days, I make it a point to be my own inspiration, but I also find it in others. All I have to do is look. I remind myself that no matter what I have to go through to stay healthy—to stay alive—it could always be worse. A good friend of mine has had 10 brain surgeries—which I can’t fathom. And yet she continually has a smile on her face. She’s my inspiration, and she tells me I’m hers.
This past spring, I was finally approved to join the waiting list for a kidney transplant. I’ve had calls from the organization twice in the last month, which I know means a transplant could be right around the corner. Honestly? I’m scared. I don’t know what will happen if I get another transplant and it fails again. But I know that if I do have the good fortune of a new kidney, I will just do the best I can to accept whatever it brings. My life is in my own hands these days, and I am making the most of it. -by Lauren Gregg