Desiree:
Were you guys allowed to go home after your hospital stay, back to where you are?
Jackie:
So after the transplant when my white blood cell count got to a certain level yeah, I got to drive back home four hours to go home.
Desiree:
I wasn’t allowed to.
Tony:
I checked in, I checked out. And, then I went home for a week and then I went to in-house physical therapy.
Jackie:
So, where did you go after the adult stem cell transplant?
Desiree:
They wanted me to stay in the area. So, I could go to the doctor like every day or every other day they wanted me here just in case something happened.
Tony:
As far as the rehabilitation and everything…
Jackie:
Did you go to therapy then?
Tony:
Yes.
Jackie:
You did.Did you have therapy?
Desiree:
I had to get a hip replacement.
Jackie:
You had a hip replacement, after the adult stem cell transplant?
Desiree:
Mm-hmm.
Jackie:
Oh, wow. Wait.
Desiree:
I did it a year after, but I was bone on bone because of the sickle cell had avascular necrosis. I did physical therapy after my hip replacement.
Tony:
Well, when I went for it, I told them up there when they released me, that I would go to physical therapy.
Jackie:
I didn’t have to go to therapy.
Desiree:
You don’t do anything?
Jackie:
Maybe because I was a therapist.
Desiree:
Maybe.
Tony:
I had been bedfast fast for so long. I was frozen, so I needed physical therapy.
Jackie:
I was walking around. I mean, even during my transplant, I was walking around. I was able to leave the room for short periods of time at one point.
Tony:
Yeah. I came home from Northwestern and stayed home for a week. And then, I went to a in-house physical therapy in Nashville where you stay. You don’t get to go home. I stayed there for 30 days. And now, I said a while ago…
Jackie:
30 days, in patient ?
Tony:
30 days. My key word to that is you got to be regimented. You have to be regimented. You got to get up at 5:00 in the morning. You got to get up 6:00. Whatever time you want to get up, you get up at that time, and this is what you do. Now, when I went in there for physical therapy. She’s a physical therapist and I don’t know how tall you are, but she was about five foot two.
Desiree:
Me too. I’m 5’2″.
Tony:
And she worked out, and she looked like a little gorilla. She wasn’t going to listen to,
“No, I need to do this, or I don’t feel…” None of that applied.
Jackie:
So you had a tough cookie therapist. I’m a little more gentle.
Tony:
There wasn’t anything gentle. She had compassion about me being sick, and me being hurting, and all that kind of stuff. She understood all that, but she never did take her foot off the gas with me. She stayed right on the gas with me because she could see that if she did, I wasgoing to get there where she wanted me to be. She knew I needed the motivation to get there because after what I’d been through.
Jackie:
Seems like we all have that in common; that we’re very motivated to get better and we were sick of being sick.
Tony:
You have to be. That’s what I said awhile ago. As well as physically, it’s mentally just as important, the way I think it is. If you’re not prepared for it, if you’re not going to give it 100% to save your life, stay at home.
Jackie:
So you don’t take any medications for scleroderma?
Tony:
No, I don’t take nothing for scleroderma.
Jackie:
See, I don’t take any medications for Lupus.
Desiree:
I don’t take any for sickle cell, no pain medication, nothing.
Tony:
Isn’t it so amazing we all take no medications and here people are out here that got the same and, they’re just loading them up with 5, 6, 7, 8 medications.
Jackie:
I felt like I was on, I was on so many medications and for some of my patients to be like Jackie, you don’t know what it’s like to take all these medications. Actually, yes I do.
Desiree:
And, then having to take them at specific times and all that stuff.
Jackie:
You can be really organized and take the ones before you eat, and after you eat, and at lunch. At the end of the day you would have timers set to take all your medication.
Tony:
And, how would you feel if you didn’t have to take all those medications?
Desiree:
Right, and now we don’t have to. People don’t think about that.
Jackie:
You know what else I noticed too? Is that when you’re sick you don’t necessarily know what it feels like to be healthy. So, when you’re healthy you’re like, wait a minute, I didn’t even know what this was like. So, I might’ve been, I probably had lupus or had symptoms before I was even diagnosed because I didn’t even know. You don’t feel when you’re sick, you don’t know what it feels like. And, then when you’re healthy you’re like, oh my gosh, this is what it’s supposed to be like.
Desiree:
There’s so much more you can do.