From Healthy Teenager to Afflicted Adult

From Healthy Teenager to Afflicted Adult

By Matthew Purvis

My name is Matthew Purvis. I’m 26 years old. I live in Pensacola, Fla., And I’ve dealt with kidney disease my entire life.

Shortly after I was born I was diagnosed with glomerulonephritis, and it soon advanced into chronic nephrotic syndrome, which didn’t respond to treatment and required a kidney transplant. Thankfully, I got a transplant from my dad when I was six years old; that kidney lasted until I was almost 20.

And then I found out what life is like as a dialysis patient.

As a baby, I remember being sick a lot and spending a ton of time in the hospital. But once I got a transplant, I was just like any other kid. Sure, I took medication daily and saw a nephrologist once a month, but otherwise I lived a normal life.

Kidney transplants last an average of about 10 to 12 years; mine lasted 13. Since I was going to the doctor once a month for check-ups I knew my kidney was failing, but there are telltale signs that are easy to spot.

I became increasingly more fatigued and started talking naps. Previously, I was full of energy and never needed to nap. I started going to the bathroom less and—at the risk of divulging too much information, but in the interest of educating people about the signs of kidney disease—my urine smelled different. And perhaps most obvious was that I started to witness a lot of swelling, especially in my ankles (a sure sign of retaining water).

It’s probably impossible to describe the feeling of being 19 years old and having your doctor tell you that, in the absence of a last-minute kidney transplant (my name was, and is, on the list, but the wait is typically 5-7 years) you have no alternative but to go on dialysis.

Hearing that news is surreal. And scary. And unbelievably depressing. It’s a lot to absorb in a short time.

The first sign that dialysis was a reality was when I had my fistula put in, which I had done five months before I needed to go on dialysis so that it could mature prior to treatment.

It wasn’t just that I had to have my anatomy altered to undergo life-sustaining treatment, it was the horror stories I’d heard about dialysis going wrong. People “bleeding out.” Extreme sickness. Plummeting blood pressure.

After consulting with my nephrologist about the pros and cons of various dialysis options, I initially chose home hemodialysis (HHD).

I recognize that many people choose HHD because it’s a do-it-yourself option that provides flexibility and control over your dialysis treatments. But, for me, the depression I felt when I learned I’d be going on dialysis worsened when I chose to dialyze at home.

Home became a prison of dialysis. Instead of three times a week—like in outpatient dialysis centers— it’s five times a week. UPS is always delivering supplies and there is a decent amount of upkeep with HHD. There is no place to get away from dialysis. I was all alone and it felt like there was no escape.

Depression is like a boxing match. You climb in the ring and start slugging it out. You might lose the first round, get knocked down in the second—and maybe even take a barrage of body punches in the third. But, if you keep battling, and you have the right people in your corner, you can win the fight.

So I made the decision to get the right people in my corner and after discussions with my nephrologist, I decided to go the DaVita’s West Pensacola Dialysis Clinic.

Coming into the clinic for my first treatment was like going to the first day at a new school: you’re in an unfamiliar place; you come in and you know no one.

But it’s amazing how quickly your fellow patients (and caregivers) become your friends. And then they become your family. You see depression, you see sickness, you see highs and lows. You commiserate with them and you celebrate with them. Having a family-like support system there is comforting, even perhaps invigorating. (My mom even joined the clinic as a registered nurse a short time after I started dialyzing there, so it’s like I have five mommas at DaVita now!)

I know this is a piece about life as a dialysis patient and not a corporate marketing brochure, but I have to give a shout out to the care team at DaVita.

Every day you are constantly reminded via TV, newspapers and the Internet about the endless bad stuff happening in the world, and sometimes you need a reminder that people really can be good. The team here (I currently am in a chair dialyzing) are that reminder and touch me and my fellow patients in a way that’s indescribable.

Through the unwavering support of my mom, my fellow patients and my care team, I am winning this boxing match against depression.

Is it easy? Heck no, but I’m doing the right things to live the fullest life I can. I watch my diet. I religiously adhere to my medication program. And in support of my personal philosophy to make sure you enjoy yourself and love what you're doing, I ride my bicycle. A lot. As a matter of fact, at the end of last year I even completed a three-day, 250-mile bicycle tour to raise awareness of kidney disease (but I’ll address that in another column!).

To my fellow patients, dialysis gives life, so take advantage of every second you have in this life.

To those who don’t realize that kidney disease is an epidemic, go see your doctor and get your kidneys screened. I didn’t have a choice about dialysis, but perhaps you do. Trust me—you do not want to be sitting in a dialysis chair thinking, “Wow, I really should have done something to prevent this.”

http://www.renalbusiness.com/articles/2011/04/a-day-in-the-life-of-a-dialysis-patient.aspx#disqus_thread