16 Years, 3 Kidney Transplants, and 20 Music Artists Discovered Counting on You

KADIN:

Since my third kidney transplant, I have changed a lot, and currently, I enjoy reading, biking, ice skating, watching movies, and listening to music. Music basically traps me in my head, which I like. Being able to relate to something, such as a piece of music, is what I enjoy most. It's really helped me get through a lot.

HEIDI:

They (doctors) came in when he was five days old and said your son has kidney failure. He needs to be on dialysis if he's going to make it. So, when he was five days old, it was the first time we were able to hold him, right before they took him into surgery took place peritoneal catheter.

I remember when the surgeons came out and said, "It was a success and Kadin was peeing the liquid gold." I cried, and cried, and cried, and it was just a whole new world for us, and just having Shawn as Kadin's hero meant so much to me. It was the greatest gift that he could give.

SHAWN:

In July of 2013, they said, "His function's just too low, so we need to put them back on dialysis." So obviously the next questions were: how are we going to do a second transplant?

HEIDI:

So, obviously, I said I want to be tested I’m his mom. And I went through all the testing, and everything was perfect it was a perfect match, and the day that I went in, my last appointment to schedule the transplant, the transplant coordinator said that his team had changed their mind. They didn't feel I would be a great fit for Kadin because he is part me part Shawn and if you rejected Shawn's kidney, he would probably reject my kidney. So, my heart dropped.

But then they said there's another option that we could do the paired exchange, and obviously, I went for that because Kadin still needed a kidney and I still wanted to donate. I wanted to help somebody else if they were willing to help my son, so we set the date for the transplant and we went in.

I got him into the clinic and the nurse stopped him and took his blood pressure, and he was 220 over 110, and she started panicking. They got a wheelchair, and they brought him down to ER. And his head hurt so bad, and the voices of people talking hurt him so bad that they had to talk in the hallway. And they said something is going on, we have to admit him.

SHAWN:

So, they um, they sedated him, took him in for the MRI. We had to go out to the waiting room, and they came out and they just said, "We lost the kidney."

HEIDI:

The hardest part is how you tell Kadin.

SHAWN:

They finally took the kidney out, and that was day 21.

HEIDI:

Valentine's Day.

SHAWN:

And I just remember him just looking at me saying, "I did all that for nothing."

HEIDI:

He called me (the doctor) and said Kadin in fact does have AT1R, and we found out that's what attacked the kidney, the second transplant, and caused it to fail.

CLAUDIA:

AT1R is a non-HLA antibody, and it's used by the programs as an additional piece of information going into transplant; whether they need to immunosuppress, or you know will it possibly cause a rejection. Same on the post they'll monitor it. And if they need to up the meds of the patient as a result, it's extra information for them to have.

HEIDI:

So, when Kadin had a nephrectomy for the second transplant, they tried to do a biopsy on the kidney, however, the kidney was so charred from AT1R, they couldn't get anything from it. That was heartbreaking to understand and to try to explain it. That we can't even give you anything Kadin to explain why this happened, there's just this acronym and this caused it. He had a 0.6% chance of finding a donor.

SHAWN:

So yeah, in April of 2017, Kadin went in and had his third transplant.

You know Heidi and I absolutely respect her. It's like we go to the doctor now and we're not really in the conversation anymore. I mean, the conversation is between him and his doctors. He understands about AT1R antibodies, creatinine levels, BUN (blood urea nitrogen). What 16-year-old knows anything about that kind of information?

VALEN:

Kadin is such a remarkable young man. I'm so impressed by him, proud of him with how he advocates for himself, is aware of his health, and listens to his body and what he needs, and he's just an amazing old soul.

HEIDI:

We want him to feel empowered and Kadin has that community now.

NICOLE:

I was inspired when I first met Kadin and heard about his story, and then learning that The Painted Turtle was part of his journey just made me want to be a part of it even more.

MICHELLE:

The Painted Turtle is a camp for children with serious and chronic medical conditions. What sets them apart and makes them different in their community is actually what brings them together here at camp.

KADIN:

What I love about The Painted Turtle is the community, the activities, the counselors are great, and just the friends that you can make there. Unlike friends at school, the people at Painted Turtle can actually understand what I'm going through on a level that my other friends will not.

SHAWN:

You know, we just want him to know that he does have a voice, and it's an unfortunate journey, and maybe not something everyone would want to go through, you know, but be your own voice, so speak up.

KADIN:

If there's one thing that I would like to say it is, please make a sub-Q injection for a camera. Medical manufacturers should have one goal: make it as painless and efficient as possible.