āI was tired of fighting a diseaseā
āI was tired of fighting a diseaseā
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 ¾«¶«Ó°Ņµ 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: Thereās multiple emotions and feelings, you know. Youāre not just diagnosed with this at a late age, youāre born with this. You grow up to living in the hospital; it is a normality. But after puberty, teenage years, thatās when you start to realize things arenāt 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 didnāt need my meds anymore. The way I told myself is, well, God gave me this so heās going to fix it. There was probably about, Iād say, a good chunk of five years I went against doctorās advice and I wanted to be normal and I was tired of fighting a disease, so Iām going to be normal.
Buddy Creech: I donāt think Iāve 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, āIf youāll take these, you will feel so much better.ā 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 thatās 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 didnāt ask for and didnāt create and that I couldnāt do anything about it. And being able to walk in there and say, āThereās a match for you,ā and watching your face and your momās face like, are you kidding? Do you remember that moment?
Cole Christopher: I remember the⦠I could probably do it now, the look: youāreā¦youāre kidding me.
Buddy Creech: Thatās awesome.
Cole Christopher: You know with the 50 plus surgeries and, you know, CAT scans and lung biopsies, you know, Iāve 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 ¾«¶«Ó°Ņµ to say, āWill you take him?ā And the question was not, letās 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, āYeah, this is going to be tough, but weāre happy to help and weāre happy to take him.ā This is the best Iāve seen you look in years.
Cole Christopher: Ever.
Buddy Creech: Yeah, really. I mean, itās amazing.
Cole Christopher: I feel like Iāve accomplished a lot and overcome a lot. Yes there was some bumps in the road, but with all the brilliant teamwork Iām able to say, Iām here today and not going anywhere.
Additional Resources
Produced by Dan Collison with interviews recorded by StoryCorps, a national nonprofit whose mission is to provide Americans of all backgrounds and beliefs with the opportunity to record, share, and preserve the stories of our lives.
Contact: storycorps@nih.gov
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