We’re continuing on telling Josh’s story and the success of his first transplant. (He’s now in need of a new kidney, see the bottom of this article for how you might be able to donate!)
WDW Hints: Josh, how soon after the transplant did you notice a difference? Did treatments change (less frequent/no dialysis needed?) Did you reach a point where you felt more “free” of kidney disease or has it always played a factor in your daily life?
Josh: It was absolutely amazing! I was still in the operating room when my mom’s kidney started working! I didn’t know that then. I was still OUT! But the doctors and nurses were so happy it was successful right away. I was in the hospital for about 3 weeks—one of those was in ICU. It was REALLY hard for me because my mom had always been at every hospital stay. But this time, she couldn’t be. She was in the hospital about a week. Her best friend took video of her talking to me and then brought the video to my hospital room. This was before Skype, FaceTime and all the awesome apps we have now. It was good to hear her voice and see she was ok. After she was released from the hospital, she was allowed to come visit because she was recovering and couldn’t ride in a car unless absolutely necessary. It was really hard being away from her, but it was all for the best. My grandma visited me daily.
The first few weeks I felt really awful in the hospital. I was in a lot of pain from the surgery. They put mom’s kidney in my abdomen, not in my back where they normally are. They had to cut through a lot to put it there and it took a long time for it to heal. I was only 7 so I wasn’t really sure if this was all going to work out or not. After I came home, I had a LOT of medication I had to take twice a day. Anti-rejection meds were new to me and they were BIG. I wasn’t happy about it, but my mom always had a way of explaining things to me. My body went through a lot of changes. I gained a lot of weight and one of the medications made my hair grow. I was 7 and had hair on my back and legs. Thick black hair. It was weird. But I got used to it. Luckily, better medications were approved and I got to stop taking the one that made the hair grow and once I stopped taking it, the hair fell out! I was REALLY happy.
The first year after my transplant I was in and out of the hospital because my body was trying to get used to having a new organ. Many times it just required a medication adjustment. But sometimes they thought I was in rejection so I had to have biopsies done. That was not fun. The biopsy itself wasn’t bad, but afterwards, I had to lay on my back for 12-24 hours and that wasn’t fun at all. So it was bumpy at first, but I remember feeling BETTER just a few months after my transplant. The doctor gave me permission to celebrate at Disney World. The day after my 8th birthday, we got to go for a few days and it was awesome. It was COLD because it was January, but it was still fun. I remember feeling much more FREE because I didn’t have any tubes or other medical equipment. It was a great start!
WDW Hints: Carolyn, when you knew the the transplant was successful, what emotions did you experience?
Carolyn: As Josh said, I was in the adult hospital next door, so I didn’t know right away if it was successful. I was out of it after surgery, but I remember my best friend, Lewanna, coming in an telling me that it had been successful. All I could do was cry and pray to God that I was so happy he was okay. Lewanna said that Josh started peeing in the operating room! For some reason I thought that was funny. It was probably effects from the anesthesia, but I thought that was hilarious.
It was a rough first year. He was in and out of the hospital and I remember thinking at one point “what have we done?” We were never in the hospital that much when he was on dialysis. I think the “not knowing” was the hardest part. This was all totally new to us and therefore, a challenge each time we ended up in the hospital. But it all worked out fine. It was amazing how much more things we could do now that he wasn’t tied to a dialysis machine. That trip to Disney was HUGE because we didn’t have to run back to the room for dialysis each night. I do remember it being cold. I also remember that I didn’t CARE that it was cold. We were there, he was happy and that was all I needed.
Are YOU a Match?
The process to help Josh and be his miracle starts with a call to his transplant coordinator (see picture below.) Although Josh is in the St. Louis area, at Barnes Hospital, the donor could literally be from anywhere. The hospital coordinates with the person to have testing done in their area. The first step is the phone call stating that the person wants to be tested. A packet of paperwork is sent out for the potential donor to fill out and then they return it to the hospital. The coordinator then schedules blood tests in the donor’s area. Some of the things that make a good candidate include being a healthy person without a disease process (diabetes, cancer, etc). Josh has A+ blood type, but that doesn’t rule out other blood types. A good candidate needs to have a normal blood pressure and have no addiction issues. Once all the preliminary things are out of the way, they start the brief psychological. The awesome thing is—it doesn’t cost the donor ANYTHING to do the preliminary work, the transplant itself, or the hospital stay after. Josh’s insurance covers all that. And now that it is done laparoscopically, the recovery time is much shorter.
Go ahead… be brave, take that first step, you just might become someone’s hero.
Miss an earlier article about Josh? Read the full series here:
- Part 1 – The Diagnosis
- Part 2 – Josh’s Childhood with Kidney Disease
- Part 3 – The Transplant
- Part 4… Transplant Success (you are here)
- 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!