Pain:

Tony:                    

Mine was 24/7. I don’t care what they give me [00:21:30] Dilaudid, I mean just morphine, whatever it was, it was just 24/7 pain all the time I had to have help. It got to a point where I had before I had my stem cell transplant, I got to the point where I was in bed phase. I’d have to have help taking a shower or doing anything. I couldn’t eat. My mouth was frozen like this, I couldn’t talk. I would drink those Ensure drinks.

Jackie:                  

[00:22:00] And you lost weight?

Tony:                    

I lost a hundred pounds. I looked like a walking dead man. I even was at a hardware store. My son helped me get into a hardware store because I didn’t see these people in a long time sick, blah, blah, blah.

I told him, I said, just help me in there for me. I won’t say hi to everybody, you know? And so he helped carry me in there for a minute. And I had, I had a couple of guys that I had known for 30 years, probably walk right by me and never [00:22:30] even know who I was.

Jackie:                  

That would be hard. Were people saying goodbye to you and stuff?


JACKIE

SORES FROM LUPUS

:30 ish – So I don’t even remember my first couple of symptoms, but my hands had sores on them. My feet had sores right on top of my skin. Real big red itchy sores. Oh my gosh. Like [00:01:00] the ones on my feet. I would rub them against the carpet as hard as I could. Like I would, I wanted to cut my feet off because they were so itchy. And then on my fingers, I’d put them in between my jeans and scratch them as hard as I could.

IN AND OUT OF HOSPITAL

so then when my legs got really swollen, my doctor sent me to a kidney doctor and they took a kidney biopsy [00:01:30] and found out I have lupus nephritis. And so from 2005 to 2010, I was sick the whole time. I was never in remission. I was in and out of the hospital every six months.

TERMINATE PREGNANCY

So they actually transported me three hours away to a different hospital, a better hospital than the one that I was at. And they, at first they were trying to treat me like with the medications that you would give a pregnant person, ones [00:03:30] that are class, whatever class they call them where they’re safe. And they were well, either you or the baby’s going to die. So then they gave me the next level up. And then they gave me the high, high doses that a fetus should never, ever have. So then we actually had to terminate the pregnancy because I was either going to die or I mean, I was going to stay till 21 weeks and deliver a 21 weeker.


TONY

12:35-  So I went to my GP doctor and I told him the way I felt, and he said the same thing, you probably got the flu. So they gave me some prescriptions, injections, and blah, blah, blah, and sent me home. I walked into his office four months later, I was already in a wheelchair.

Desiree:              

Oh wow.

Jackie:                  

[00:13:00] Due to pain?

Tony:                    

Systemic scleroderma, what it does, and I tell everybody, it makes you like a concrete figurine in your front yard. They can understand that. Cause everybody’s got one.

Jackie:                  

So all your joints were stiff?

Tony:                    

It just draws you up into a knot and you just can’t release it. It just draws you up. Your immune system starts attacking your body, starts eating your body up from the inside, thinking there’s something wrong when there’s really not anything wrong. Other than a bad gene [00:13:30] is what started it.

13:45 ISH – They think there’s something wrong. So the first thing your immune system eats is your fatty tissue under your skin and what starts drawing you up and whatnot, and that makes you hard. And I got just where my skin was just hard as a rock.

15:30 – when I got into that wheelchair, I was already at the point then where I was in 24/7 pain. I mean, it didn’t make any difference what I was doing, standing up, sitting down, laying down, whatever. That’s a 24/7 thing. [  ] when I finally got to the point of going to this other hospital, this major hospital, I stayed there for 10 days. They treated me for 10 days. And at the end of 10 days, they released me and [00:16:00] 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.

SKIN SO HARD BROKE A NEEDLE

Tony: 

finally found Dr. Burt and went to Northwestern. When I checked in up there, they have what they call a skin density [00:19:00] test. And the max you could be as a 51. I was a 49. Now, remember the concrete figurines I was talking about? The nurse would try to take a blood draw out of my arm here, and bend the needle. That’s how hard I was. It just blew them away.


DESIREE

SICKLE CELL – LIFE-LONG DISEASE

05:00 ISH – So sickle cell is a blood disorder that you live with your whole life. So this was something I was born with. The reason why I got a stem cell transplant is because when I was in college, things just progressively got worse and worse. I tried an oral chemotherapy like you did. And it [00:05:30] did not work. I was in the hospital every other week. It seemed like I couldn’t walk at one point because I got avascular necrosis. And it’s basically where the blood supply to a certain area of your body is cut off. For me, it was my hip. And so I couldn’t walk and I had to leave school.

TONY ASKS DESIREE ABOUT SICKLE CELL

Tony:                    

You said it was affected your hip?

Desiree:              

Yes.

Tony:                    

Is that normal for the hip or can it go to any place in your body?

Desiree:              

It can go to any place in your body.

Tony:                    

You said you were born with it, is it hereditary?

Desiree:              

Yes. It is hereditary.

Tony:                    

So [00:06:30] other members of your family had it too?

Desiree:              

No. What happens with sickle cell is each parent carries a sickle cell trait and then the child would get sickle cell, but it’s not all the time. I have a sister and she doesn’t have sickle cell, but she does carry the trait. So that’s a little bit tricky.

Jackie:                  

When did you find out that you have it?

Desiree:              

So my mom didn’t find out I had it until I was three years old because I guess they did testing on children to figure out if they had sickle cell late.

Jackie:                  

Now they [00:07:00] do testing right away, don’t they.

Desiree:              

They do testing right away.

DESIREE’S PAIN

So with sickle cell, you get jaundice, very fatigued and you get pain crises. And for me, I would get them on my joints. I [00:08:00] would get them in my back and it was a terrible pain crises.

Tony:                    

Did you say pan crises?

Desiree:              

Pain crises. And you have to go to the emergency room, you need to get fluids and you need pain medication right away. But sometimes the issue with sickle cell is they feel like you’re drug-seeking when you go to the hospital and they don’t really want to give you a pain medication. So I dealt with that a lot too.

Tony:                    

But you were probably dealing with somebody there that was very ignorant to what you had, basically. [00:08:30] Real lack of words, they would probably ignorant to what you had.

Desiree:              

Yeah. Definitely.

Jackie:                  

They couldn’t prescribe anything to you so that you could have your medication at home?

Desiree:              

So they do prescribe you medication that you have at home. But when you can’t treat it at home, your only option is to go to the emergency room. And so you have to get either pain medication that’s a little bit higher or more frequent and you need fluids or sometimes you need a blood transfusion too, because your hemoglobin is so low.

Tony:                    

So how, how often were you going to the emergency room?

Desiree:              

[00:09:00] So before a transplant, it seemed like I was there every other week, like before I would go every couple of months, which is still a lot, but right before they were telling me I should look into transplant. It seemed like I was just going back to back to back to back and I just couldn’t take it anymore. Yeah.

Tony:                    

And the pain you were suffering. Was it 24/7? Did it ever let up, did it get milder or stronger or?

Desiree:              

It does let up sometimes, but [00:09:30] at the point when we were discussing transplant, it was not letting up for me at all. I was in pain every single day.

Speaker 1:          

You said it was joint pain. Is that where most of the pain comes from, Is joint?

Desiree:              

For me, most of the pain was in my joints, but for other people it can happen anywhere in their legs, their arms, their back.

Tony:                    

There’s lack of blood flow, that get to that part that aches. Yeah. I’m just, I’m trying to understand that. I never heard anything about this. I’m just trying to understand it.

Desiree:              

Yeah.

Jackie:                  

So it’s not auto-immune.

Desiree:              

No, it’s not.

JACKIE:  58:15 –               

I got really, really sick and had to go through the adult stem cell transplant. All of a sudden, I’m bald, and I’m fatigued, and I don’t have a job, and I’m not planning my wedding.

Wish