Adult stem cell recipients reveal how they first learned stem cells.

Jackie:              I first learned about adult stem cell transplants when I was really, really sick. And my doctor told me later, I didn’t know this obviously at the time, but he told me, “Jackie, your body was trying to die.” And so at that point he suggested that I go down to Chicago, to have the adult stem cell transplant. I had never heard of it before then. I don’t know about you.

Tony:                I hadn’t either. I mean, I’d heard the term stem cell transplant, but as far as the actual adult stem cell transplant and what took place in the transplant I had no idea.

Jackie:              The process. Yeah. I didn’t know the process either. So when I did go and get tested to see if I qualified, and learned that it was a six week process of just to do it, I was kind of taken aback because you know, to be four hours away from my family, I thought I could just go down there and get a transplant and come back home. And that’s not what happened at all.

Desiree:           Yeah. I didn’t find out about adult stem cell transplants until I got really, really sick. I was in the hospital every couple of weeks and I came to my doctors. Well, I went to my doctors at KU and they were basically like, oh, we think you should look into a stem cell transplant. And I was like, what is that? And they explained it to me, and then I did a lot of research about it. I even traveled to other areas such as North Carolina and Texas to find the best place to get it. But I ended up coming back here because I was more comfortable with my doctors and I trusted them more than anybody else.

Jackie:              Was yours experimental for scleroderma?

Tony:                Absolutely. Yeah. It was clinical trial.

Desiree:           Mine was a trial, too.

Jackie:              So how did you get to your adult stem cell transplant?

Tony:                It was through that article from Reader’s Digest.

Jackie:              An article?

Tony:                An article from Reader’s Digest.

Jackie:              See, our doctors told us.

Tony:                No doctor ever told me or said, “Hey, you need a stem cell transplant.” Or, “You should get a stem cell transplant.”

Jackie:              You had to figure it out on your own and research. I think some doctors don’t know about it.

Tony:                They don’t.

Jackie:              I had to teach some doctors that I have about my stem cell transplant.

Tony:                I still don’t understand why it’s still a clinical trial. But, I guess that’s beyond my pay grade.

Tony:                I got my prognosis and on my prognosis, my release papers, it said, prognosis unfortunate. And I said hey doc, what’s this mean, unfortunate? He said, well, I hate to tell you this, but the disease you’ve got, condition you’re in, you probably got about 120 days to get your affairs in order, sent me home.
So that’s a pretty tough pill to swallow. So I come home and we had a friend of ours, the one I told you about had scleroderma in her chest. She had cut an article out of reader’s digest from five, six years ago about scleroderma. And she cut that and it had this doctor’s name in there. Dr. Burt. And so when I got sick, the person who helped me with this and her were good friends. And so they, those two got together and she said, yeah, I’ve got an article here about this. And it’s got Dr. Burt’s name in there  and it’s got his patient’s name is in here. And we Googled around and found her phone number and call the number. And she actually answered the phone. I said, God, how’s this work? Cause sometimes you can’t get a cell phone to work across the street. But in here she answered the phone. So we talked to her and she told us what the deal was and what she had been through. And she said that on one to a hundred, she said at that point in time, she was probably 95%