“I was tired of fighting a disease”

Cole Christopher spent twenty years living with chronic granulomatous disease (CDG), a hereditary immune disorder that required daily medication and frequent hospitalizations. In 2014, Cole was losing his battle with a spinal infection when he came to NIH for a risky bone marrow transplant. Now recovered and healthy, he sat down with his long-time physician, Dr. Buddy Creech, to reflect on his experiences and the transplant that saved his life.

Transcript

Buddy Creech: What was it like being in the hospital as a kid?

Cole Christopher: There’s multiple emotions and feelings, you know. You’re not just diagnosed with this at a late age, you’re born with this. You grow up to living in the hospital; it is a normality. But after puberty, teenage years, that’s when you start to realize things aren’t normal, so things got worse. You know, sometimes you would be in the hospital every month or every other month.

There was a time where I felt like I didn’t need my meds anymore. The way I told myself is, well, God gave me this so he’s going to fix it. There was probably about, I’d say, a good chunk of five years I went against doctor’s advice and I wanted to be normal and I was tired of fighting a disease, so I’m going to be normal.

Buddy Creech: I don’t think I’ve ever gotten so angry with a patient, because I just knew how much I cared about you, and I just wanted to somehow get inside your brain and say, “If you’ll take these, you will feel so much better.” Aww, I got so frustrated with you.

But maybe my favorite time was when we were sitting in the room and you had decided after getting pretty sick that getting a bone marrow transplant might be worth trying, knowing that it would be risky, especially since you had infection, and knowing that there was no complete promise that it would work. And I let you know that there had been match found in the registry. And I think that’s still one of my favorite moments with a patient, ever.

Cole Christopher: Really?

Buddy Creech: Oh yeah. Because I saw you grow and I saw you struggle, rightly so, with a disease you didn’t ask for and didn’t create and that I couldn’t do anything about it. And being able to walk in there and say, “There’s a match for you,” and watching your face and your mom’s face like, are you kidding? Do you remember that moment?

Cole Christopher: I remember the… I could probably do it now, the look: you’re…you’re kidding me.

Buddy Creech: That’s awesome.

Cole Christopher: You know with the 50 plus surgeries and, you know, CAT scans and lung biopsies, you know, I’ve got battle scars all over me, you know, from literally head to toe. When you came in there that day, my world lit up, I could begin to see hope, because after 20 years of fighting a disease, I did begin to lose hope. I was severely ill. I was literally on my deathbed.

Buddy Creech: You were.

Cole Christopher: I still look at the pictures and think, how was I even alive?

Buddy Creech: Well, you had lost so much weight and I remember calling the NIH to say, “Will you take him?” And the question was not, let’s transplant him because things have been hard and we want to make things better, it was can we transplant him to save his life? And them saying, “Yeah, this is going to be tough, but we’re happy to help and we’re happy to take him.” This is the best I’ve seen you look in years.

Cole Christopher: Ever.

Buddy Creech: Yeah, really. I mean, it’s amazing.

Cole Christopher: I feel like I’ve accomplished a lot and overcome a lot. Yes there was some bumps in the road, but with all the brilliant teamwork I’m able to say, I’m here today and not going anywhere.

This page last reviewed on July 25, 2016