We’re continuing to learn more about Josh’s story and his immediate need for a kidney. If you missed it, you can read all about Josh’s Kidney Disease Diagnosis here. While we’re sharing his full story over the next week or so, the need for a new kidney is now. At the bottom of this article, you can find out how to get the process started to see if you might be that perfect match for Josh.
Josh’s Childhood with Kidney Disease
WDW Hints: Prior to your transplant, Josh, how were you feeling? Do you remember what treatments were like as a child? Were there activities you couldn’t participate in, due to treatments or overall health?
JOSH: I remember the thing that was really hard was not being able to go outside with my friends after 7pm. My dialysis was in my room from 7pm – 7am, 7 days a week. My friends would be doing stuff at school or just playing in the neighborhood, and I couldn’t. I don’t remember when I was a baby, of course. And thinking back, I feel like I didn’t really KNOW that I was sick until I was a little older. I remember not being able to play outside. I remember seeing sunsets out my window instead of in person. I remember seeing baseball games on TV instead of at the ballpark. But I didn’t really know I was REALLY sick until I got a really bad infection in my tummy from the dialysis catheter and had to be on hemodialysis. I was SO SICK. Hemodialysis is so different. The blood actually leaves your body to be cleaned. My body didn’t react well and I felt awful all the time. I was exhausted. I didn’t want to go to school. I didn’t want to get out of bed. Food didn’t taste right so I had a diet of chicken nuggets and mashed potatoes. Those were the only things I could eat.
I couldn’t participate in contact sports because of the dialysis catheter. I REALLY REALLY wanted to play hockey—so bad. In every way. My cousin was a great hockey player and I just wanted to play. But because of that catheter and the likelihood that I could get injured, I wasn’t allowed. That was hard for me. That’s the only sport I was ever really interested in.
CAROLYN: I remember when Josh was a baby. Little ones can’t tell you where it hurts, but as a mom, you know. Josh threw up every single morning—usually all over me. His little body was in turmoil all the time. Even though peritoneal dialysis was much better than hemodialysis, his little body just went through hell every night. In the morning, like most of us, he was hungry and ate well. But it all came back up. I remember the nurses telling me at our appointments “now if they say he needs a feeding tube, don’t fight it. Just let them do it.” That didn’t sit right with me. Neither did the advice of the social worker who said “Quit your job and go on Public Aid. This will break you financially.” Well, I kept my job and Josh never had a feeding tube. And when he was about 3, he got BETTER!! He actually got to be off dialysis for TWO WHOLE YEARS between 3-5. It was an amazing time! He felt good, he looked good, he wasn’t tied to a machine. He took swimming lessons, played soccer, and took gymnastics. It was a great gift.
JOSH: Oh YEAH! I remember that! Isn’t that when we went to Disney for the first time??
CAROLYN: We did celebrate the time without dialysis by going to Disney for the first time. We took my mom with us and had the time of our lives. I remember Tapestry of Nations parade coming by. It was drizzling and Josh was in his yellow Mickey poncho—dancing in the rain and splashing in the puddles. My little boy GOT TO BE A LITTLE BOY. It was AMAZING!
But unfortunately, it didn’t last. Shortly after that, he got sick again. His little kidney that was too small to begin with just couldn’t keep up anymore. So, it was back to peritoneal dialysis. Back to being tied down 12 hours every night. Back to tons of doctor appointments, lab work, and not feeling well. In April of 2003, Josh got to take a Make A Wish trip. Of course he chose Disney. Unfortunately, he was so sick, he didn’t really enjoy it. He got tired so quickly, even with his stroller. He still had to be on dialysis every night. So although we love Disney, it was a difficult time. And then it was time. . . His transplant was scheduled for September 2003.
- Part 1 – The Diagnosis
- Part 2 – Josh’s Childhood with Kidney Disease (you are here)
- Part 3 – The Transplant
- Part 4 – Transplant Success!
- Part 5 – New Kidney Needed
- Part 6… When a Living Donor is found, we hope to update you right here!
- You can also visit LetsHelpJosh.com for more info and follow along on Facebook!
Consider becoming a Living Donor
As we’re publishing this very article today (on Feb 6, 2018), Josh is in the hospital right now. Josh had surgery yesterday to place a catheter to begin hemodialysis. He and Carolyn didn’t want to do dialysis at all, they were hoping to go straight to transplant. But unfortunately they can’t wait anymore. Josh would have preferred peritoneal dialysis to hemodialysis, but that’s not an option either right now. Josh & his mother, Carolyn, aren’t discouraged though! They know the perfect match is out there and it might just be YOU!
Will you consider becoming a Living Donor? Even if you aren’t an exact match for Josh, you could be a match for someone else in need. Too many people with Kidney Disease are dying just waiting to see if a match is made. Living Donors can drastically reduce that waitlist – what a Gift you could provide!
For Josh, the process begins with a simple phone call. The hospital will then look up a local health facility based on your location that will allow you to be screened to see if you’d qualify to be a donor. From Josh’s Medical facility:
For more general information on Kidney Donation, please visit: https://www.kidney.org/transplantation/livingdonors