Ashley Robinson, Living with Sickle Cell Disease & Pain

Dr. von Gunten: Ashley, tell me what it’s like having sickle cell disease.
It is hard, it’s very hard, actually. Sometimes, some people think it’s textbook and it’s not. Whatever you learned in school, it’s not that. Different things cause crisis. The pain travels and you never know when you’re going to have a crisis. So, it’s one minute, you’re fine, and literally, maybe 15 minutes later, something hurts. So that’s how quick it can change everything.

Dr. von Gunten: When do you first remember having pain from the sickle cell?
The furthest I can remember, I was maybe six or seven and my mom had to call off work to take me to the hospital and she took me, and the day that she took me, I ended up getting admitted. And it’s literally been the same thing since or just about since sometimes she would take me in and I would then get admitted, sometimes she would take me and I would get admitted, sometimes it would be both me and my sister that she would have to take. So, it was hard.

Dr. von Gunten: You said you were in the hospital just last week. Describe the pain that got you admitted.
I started out with chest pain and… it was hard to breathe but it didn’t ̶ it didn’t hurt to breathe, I should say. So, I kinda felt like maybe I can fight it here at home. And then a couple days later, it went from just my chest to my back hurting, then it went from my back to my right leg hurting. Then it went from my right leg hurting to it being swollen, and then out of nowhere I had a headache. And Thursday, I had a day off and my grandmother and my aunt had noticed that my eyes were yellow.

And my grandmother had took me to the ER and when I went, they gave me a dose of morphine, 2 milligrams of morphine and they came back and told me that my hemoglobin was 6.2, and they said that they were going to admit me because I needed a blood transfusion. And I was in ER for maybe five hours and when I had came in, that’s when they gave me the dose, and the entire time I was in the ER waiting to go up, they didn’t give me anymore medicine so I was down there in a lot of pain. And then by the time I had got to the floor, the doctor who had admitted me he had told my nurse to do half of a milligram or a whole milligram of Dilaudid and to give me my orals. And I was talking to my nurse and I told her like, “You know, if the orals were helping, I wouldn’t come to the hospital,” and she was like, “Yeah, I know. He’s just not comfortable with doing your pain plan.”

And that’s pretty much what it was the entire time I was there. The last, maybe, three days, that’s when they decided that they were going to go ahead and put me on a PCA but the PCAs down here don’t accommodate what I get. I get 10 milligrams of morphine every ten minutes and the highest their PCA pumps go are to 5, so I was getting 5 milligrams every ten minutes. And it was starting to help with the pain a little bit. And maybe the second day I was on my PCA, one of my nurses just randomly drew blood because I was telling her my left leg was starting to hurt and she was like, “Okay, something’s not right,” so she randomly drew blood and when she did, my hemoglobin had dropped again.

So, they had did a blood transfusion the first night and I had got two units and my hemoglobin had went up to, I believe it went to 7.5. And they were writing off of that for literally three days, “Oh, your blood counts look good, it looks better, your hemoglobin is in the 7s, so I don’t know why you’re saying you’re still in pain.” And when my nurse drew blood and it came back that my hemoglobin had dropped again and it dropped back down to 6.2, she was like, “Yeah, I knew something wasn’t right because you were saying you’re having new pain that’s traveling, and now you’re saying that both of your legs hurt and your back hurts and your chest hurts, so I knew something wasn’t right.” So, the doctor had decided that he was going to give me a unit of blood. But because they couldn’t… find a vein, they had to disconnect my PCA pump for the two hours that I was getting blood. And they gave me… 15 milligrams of Demerol, Flanakin, I think that’s what it’s called, and they gave me Benadryl and Tylenol because I’ve had reactions with the blood in the past.

So, this trip it was pretty much like the majority of the trip, just trying to get them to… get all of us just get on the same page to find something that would help with the pain. When I get admitted, they are just comfortable with, “Oh, we’ll just give you your orals,” where I just feel like, “If the orals were helping, I would have never came.” But before this last admittance, I hadn’t been in a hospital for almost a year.

Dr. von Gunten: For almost a year. Now, you said… the pain medicine you usually get, the dose you usually get, tell me more about what you know about what works for you because you’ve now had 25 years of experience with this.
Okay, so… when I first came down here, the first time I had a crisis, my grandmother and my aunt had drove me back to Columbus and I ended up getting admitted at Grant and… being at Grant, I was on what I would regularly be on, which would be my PCA pump.

Dr. von Gunten: And say what those usual settings were.
The usual settings were my PCA pump would be 10 milligrams of morphine every ten minutes and no continuous so it would be whenever I pressed the button or request the medicine, I would get it.

The next time I ended up in the hospital was November which was the next month. And it was late at night and me and my grandmother were looking at each other like, “Yeah, we cannot jump on the highway, we need to find a hospital.” So she took me to Grand View, which was the hospital I was at last week. And when we went in the ER, they actually were… helpful, they gave me three doses of 5 milligrams of Dilaudid and then they told me and my grandmother that they were going to admit me because my hemoglobin was low. I don’t remember what it was because I was ̶ a year ago, well, almost two years ago and she had stayed with me until they took me up to my room, she came with me to my room and then she had came home because when we left here it was like 10 o’clock. By the time I got admitted, it was like 4:30 in the morning. So they saw the paper that she provided me with and then they put me on the PCA pump and they were trying to do the 10 but then they had realized that the PCA pump doesn’t accommodate it so they did 5. And they had me on 5 milligrams every 15 minutes and I believe I was in the hospital for six days.

So, the doctor that I had spoken with, she was pretty much on board and just trying to be helpful and everything, so every time I would go to the hospital after that, they would accommodate me with my PCA pump. But around June of last year, it stopped. They stopped with the PCA pump. One of the doctors literally looked at me after I got admitted and got on the floor, told me he was uncomfortable with doing what was on my pain plan and said that he was going to do what he wanted to do, which was a milligram and a half of Dilaudid every six hours. And that didn’t touch anything. I was in the hospital that time for four days just because it literally was a battle, and I felt like, “If you’re not going to help me, then I can just go home and try to… work it out, myself.” So that’s pretty much what I did, I came home and tried to work it out myself.

Dr. von Gunten: When that kind of things happen, how does that make you feel?
It makes me upset just because I feel like with you being a doctor, you’re supposed to help me, you’re not supposed to look me in my face and be like, “Yeah, I don’t care. I’m gonna do what I want to do and this is what I want to do.” If I’m providing you with something and telling you this is my pain plan, this is what works for me, it’s literally written on the paper, this is what works for me. So if I’m providing you with that, I think we should go that route. But some doctors, they feel like 4 or 5 milligrams of Dilaudid is too much, they feel like 2 milligrams of morphine is too much. When I went to the ER, July of last year, I went to a different ER, the ER that my doctor works at, the doctor that you partnered with. When I went, the ER doctor who was on call, he had came to the room that I was in and he looked me in my face, he said, “Yeah, we’re going to send you home.” I wasn’t even there for an hour, nobody had did an IV, nobody came to talk to me, nothing. The nurse came in, said that the doctor would be in and told me to change into the scrubs that they ̶ I mean, not scrubs but the gown that they give you. And I changed into it and then 15 minutes later, he comes in, says he’s going to send me home, says that the amount of medicine I get would be enough to kill a horse and that he’s not going to give that to me. If anything, he would give me 2 milligrams of morphine or give me half a milligram of Dilaudid and send me on my way. And he literally did give me 2 milligrams of morphine, a half milligram of Dilaudid and sent me home.

Dr. von Gunten: How do you explain that?
I don’t know how to explain that. Me, personally, I felt like, the doctors might be scared just because of what’s going on with the whole opiate thing, so I feel like some of them might be scared and they don’t want to be the one to have given this person this amount of medicine, and that amount of medicine might’ve caused a person to be sedated or for them to OD or lose their life or something. So, they’re trying to protect themselves, their career, and their medical degree, which me, personally, I think that’s fine but it’s a different way you can go about it instead of being rude.

Dr. von Gunten: So being afraid is one explanation. Anything else?
I just feel like they’re afraid.

Dr. von Gunten: You feel like they’re afraid. Did you ever think that because you’re African-American, that enters into it?
Sometimes. I had an experience where when I first started going to OSU, I was in the ER for 13 hours and there was a man who came into the ER before they had called me to the back, and he was in triage and it was loud because where I was sitting was literally right next to him where he was in the triage room. And he had let the triage nurse know that he is a sickle cell patient but he is also a drug addict. So that just kind of threw me off because like, okay, now it makes sense why some doctors are just… like, “I’m not doing that.”

Dr. von Gunten: Have you known other sickle cell patients who are also drug addicts?
Mm-mm.

Dr. von Gunten: You haven’t, okay.
That was actually the first time I actually ever heard that. I’ve grown up, I’ve heard and I’ve experienced that some doctors they assume that sickle cell patients are drug addicts, that that’s all they want. When they come into the ER, that’s all they want is the medicine or whatever they’re going to give them, and it’s not. With me, that’s not, with my sister, that’s not with the friends that we’ve had growing up, that’s not the case. I’ve literally seen people that I was close to lose their lives over having sickle cell.

Dr. von Gunten: Yeah. What’s that like having a disease that you know some people die of?
Scary.

Dr. von Gunten: Yeah, it would be scary.
Scary just because… you don’t know if you’ll be next. So…..

Dr. von Gunten: So how do you cope?
Memories, I guess, like I just… I’m sorry, I’m about to cry.

Dr. von Gunten: Well, it’s really sad so it makes sense to cry.
(sniffles) Just try and think about things that we did growing up or any type of memories that I had with them, just try not to think about it.

Dr. von Gunten: So, thinking about happy things is a way to… change your mind—
Oh, thanks. Thank you.

Dr. von Gunten: If you think back of all the interactions you’ve had with doctors and others when you’ve had a crisis, how many have been, as you’ve described, supportive or wanting to be helpful and how many would you say were in the…didn’t listen to you, making assumptions about you or being very afraid, let’s say, because that’s how you would characterize them?
When I was in Columbus because I moved, so when I was in Columbus I had the majority of the doctors they would be helpful, especially when I was a kid, they always worked with my mom and my dad to just find something that helped with me and my sister or… try to find ways to help keep us out the hospital and stuff. But transitioning as an adult, it’s kind of different, well, it’s not kind of different, it’s extremely different. The care that you get as a kid is nothing ̶ I mean, it’s everything compared to what you get as an adult.

Dr. von Gunten: So, say more about that, compare and contrast, because you were treated at the Children’s Hospital with pediatricians, and then you turn 21 and they walk you across the bridge to the adult side.
The adult care, it’s… I don’t even know how to describe it. As a kid, when you would tell them that you hurt, you don’t hear them say, “Oh, well, you’re not hurting that bad,” or, “Your blood work doesn’t say or doesn’t support what you’re saying,” because as an adult, I’ve been hearing that a lot, I’ve been hearing, “Oh, well, your blood work doesn’t support that, you’re saying that this hurts or that hurts but your hemoglobin is blah-blah-blah or your LDH is blah-blah-blah.” Oh, excuse me. And it’s just like, okay, and I’ve said it multiple times to multiple doctors, there have been times where my hemoglobin has been low and I’m perfectly fine. I’m running around doing whatever, and then there have been times where my hemoglobin has been fine and I can barely get out of bed. So, it’s just like the adult care, it’s ̶ they can be better. It could be better.

Dr. von Gunten: Well, it sounds like the reactions you get mean they don’t trust you.
Yeah, just because I feel like… as an adult, especially, being in the hospital, you see a lot of things, or working at the hospital, you see a lot of things. So to have somebody come in and say, “Oh, I’m in pain, this hurts, this hurts, I was taking this at home, it’s not working. This is what I normally get,” like I said, sometimes, they think you’re just looking for something when in reality, it’s not that, you’re looking for relief because for you to go to the hospital, the pain is to the point where you cannot take it anymore. If you tell yourself, “Okay, it’s time for me to go,” your orals aren’t working, you’re not getting any type of breakthrough, you’ve done everything that you can, your coping skills or whatever to try and help you get your mind off the pain or to get you some type of relief and nothing is working, when you go to the hospital, literally, the hospital is your last hope to be able to have some type of relief or to be able to help fight the crisis way more than you were able to fight it at home.

Dr. von Gunten: So, if you were to give advice, what you would want every doctor, every nurse to know about taking care of patients like you, what would you want them to know?
Just be considerate and don’t be rude. There are ways that you can say things to people and to look somebody in their face and say, “Well, I’m going to do whatever I want to do and this is what I’m going to do,” that doesn’t make somebody comfortable and be like, “Oh, okay, next time something happens to me, I’m gonna come back here.” No, that’s not going to make somebody want your care. It’s not going to make somebody want to put their lives in your hands to help them get better. I feel like they can come to ̶ everybody can be on the same page. If you aren’t comfortable with high dosages of IV medicine or oral medicine, period, you can talk to the patient and see what they’ve had in the past and what’s helped in the past or you can look in their chart because I’m 25 and I know you can look at my chart and my chart goes back way to when I first started going to the hospital. So it’s going to have everything in there what I used to get, what I get now, what worked, what didn’t, what I’m allergic to medicine-wise, it’s going to have all of that in there. So my thing would be just to be a little more considerate instead of being just so quick to assume that a sickle cell patient is looking for drugs or to assume that they’re faking or just being rude, period, like, that doesn’t make somebody comfortable with you taking care of them. That actually makes them want to have another doctor or at least somebody who would be on the same page with them to help get them better.

Dr. von Gunten: Thank you. Anything else you want to say before we finish?
Mm-mm .

Dr. von Gunten: Thank you.
You’re welcome.

Dr. von Gunten: You’re so articulate.
Thank you.

Dr. von Gunten: It was wonderful. – I really appreciate it.
Thank you.

(Dr. von Gunten turns to Ashley’s mother)
Dr. von Gunten: So, tell me a little bit about your professional background.
I am a nurse. I worked at Riverside Hospital for 27 years and up until three years ago, I moved to Cincinnati. Now I’m a nurse for a surgical breast oncologist.

Dr. von Gunten: Now, you have two daughters who have sickle cell disease.
Yes.

Dr. von Gunten: Tell me what that’s been like.
From day one, it’s been hell. When you have two, there’s nights that I would spend the night if they’re both in the hospital at the same time. Of course, they can’t put them in the same room so I’m running between rooms. I would spend the night at the hospital, get up, shower, and then go to work, and then come back to the Children’s Hospital, trying to keep all their appointments together, trying to keep what works for one, what doesn’t work for the other. I’m keeping all that in my head so when we do present to the ER, I can tell them what we do. The Children’s experience… it was okay, the only thing, I think, they set them up to fail but they don’t know they’re setting them up to fail because their thing is, as a child, “Oh, we want to make sure every boo-boo is better, you don’t have any pain.” Sure, you can go have this and this and it’s the Shangri-La. What they failed to teach them is about the transition, I think they wait too long to start that transition period. They need to learn because once you get over to the adult side, everything you got at Children’s, you’re not going to get.

So, when they were of age, when they got older, I was able not to spend the night because they knew pretty much, they knew their meds, they knew what they look like, so I’ve actually had my youngest one, somebody gave her the wrong medication and she knew, she looked, she was like, “That’s not my pills.” So I was okay with leaving them by themselves and then, of course, when they got to the adult side, I wouldn’t stay unless somebody was in ICU or something like that. But trying to work, not call off, because you never know when a crisis ̶ they just come out of nowhere, out of nowhere and you’re like, “Okay, well, there went those plans,” so it’s basically day by day.

Dr. von Gunten: Day by day. You said something, you said, what works for one, doesn’t work for the other. Say more about that, you have two children, both have the same disease and yet, you’re saying they’re different or the treatments are different. Say more about that.
I believe Ashley gets morphine, Brianna does not, she gets Dilaudid. Morphine didn’t work for her; she built up a tolerance. And then in Columbus, because we presently live in Cincinnati now, but in Columbus, when she was at OSU, she got the ketamine drip. They took her off of the opiates and that way, gave her receptors a chance to dry out, so to speak, and she would get out the hospital quicker. They’ve never done that for Ashley. So she has no clue about the ketamine. So, it’s just different.

Dr. von Gunten: What’s that like for you as a mother, watching the different… the different approaches to your two children?
If they would just, like she said, approach her with kindness, and not be as rude as they are, even the nurses are rude, and it’s just like, “I’m a nurse, how can you do that to somebody?” It’s awful. There was one nurse who just kept making the comment for my youngest, Brianna, “Oh, my God! I’ve never had a patient on this amount of medicine!” Don’t say that to her. She already feels bad, she doesn’t want to be here, she knows that she’s on a large amount of medicine so if you have to keep talking about it, do it outside her room. Don’t…I’m their biggest advocate, I try to make sure they get the care that they should be getting but now that they’re grown, I can only say so much.

Dr. von Gunten: Do you feel helpless?
Mm-hm.

Dr. von Gunten: How do you cope with feeling helpless?
You just do, pray.

Dr. von Gunten: Pray?
Mm-hm.

Dr. von Gunten: Is your faith your source of strength?
Oh, yes.

Dr. von Gunten: Say more about that.
Absolutely, I mean you go to the Father, everything’s taken care of. You just leave it there, I can’t… worry myself sick. I have to just pray, and I know He’s going to take care of them.

Dr. von Gunten: How do you explain, as you said, nurses behaving badly?
(chuckles) I wish I could explain that. I’ve been a nurse since 1985 and my feeling is, if you don’t have the heart to serve, then don’t do it. You have to have that heart to serve, not judge people. It’s not for me to judge you, I’m here to take care of you and to help you. I don’t have to answer for whatever you’ve done or whatever you’re doing. I’m here to take care of you, so sitting at the nurses’ station, cackling, talking about people, that drives me crazy. I can’t take it.

Dr. von Gunten: Because you are a nurse, I suspect you’re very…you know what to watch for, you know the nuances of nursing. And then to see bad behavior from your own profession.
I’ve told them on several occasions to do an incident report or a care report about the nursing care that they’ve received, I’ve told them to call the house nursing supervisor to discuss the care that they received because it’s not fair to them. They’re there and they’re sick. They need help, not judgment.

Dr. von Gunten: What role does being African-American play in all of this, do you think?
I think there’s some. I think there’s some cases where… the word “sickle cell” equals a black person, equals, “Oh, they’re just here for drugs.” Not all cases but most, I think.

Dr. von Gunten: Do you think most?
Mm-hm. Because especially if you don’t have anyone going with you to the ER, to advocate for you, it’s bad, because when I go with them, it’s totally different.

Dr. von Gunten: Oh, so it’s different if you’re there. Why do you think that is?
Because they look at them as kids, they don’t think that they’re 25, 24, 18, they think they’re younger. And so, with me there, it’s more or less, “Oh, okay, they know about sickle cell, okay. Well, maybe we’ll listen to her. Not all the time but maybe.”

Dr. von Gunten: And what’s it like when they don’t listen to you?
Very frustrating. Very frustrating. You’re just like, “Dude, I’m trying to help you. We’ve been doing this for 25 years, you might’ve been doing it for four; I’m telling you these are the things that gets them out of here quicker.” But like she was saying, they don’t want to follow the pain plan, they don’t want to follow what they normally take or in my youngest’s case, the whole thing with the ketamine drip, they don’t do it. “We don’t do that here.” Okay, I understand you don’t do it here but I’m just letting you know what works for her. So, if you know that works for her, maybe you need to find something else.

Dr. von Gunten: What do you think explains them not listening to you or not following the pain plans written?
The whole opiate crisis, the whole thing about being scared of losing their license. But my thing, I don’t understand if you have a document that is signed by another physician, alright, okay, you might not feel comfortable doing it, but can you at least make a phone call or can you look and care everywhere and see what has worked instead of just being so quick to, “No.” I know you don’t want to lose your license but let’s step out the box and investigate further, you want to help that person, not send them away in excruciating pain.

Dr. von Gunten: So, you think it’s the fear, the fear explains it.
Well… yeah, I’ll leave it there.

Dr. von Gunten: What else went through your mind?
(chuckles) – The race.

Dr. von Gunten: The race. It’s sensitive in America to talk about it and yet, it’s real and so.
It’s very real.

Dr. von Gunten: I’d appreciate you describing what it’s like being black and experiencing this and thinking, “Well, it’s because I’m black.”
(sighs) Unfortunately, people have come to the ER, of color, and that their behavior has warranted that target. And then there’s people of color that come to the ER that act perfectly fine. I think it’s a balance of how you react when you’re in the ER. If you carry yourself with respect for yourself, you just might get that respect back, hopefully, you would. I think a lot of doctors have stereotyped black people to behave badly because that’s what they’ve seen when they come in the ER. So absolutely, I think they think, “Oh, sickle cell, black, yeah, they just want drugs.” I’ve thought that for a while. But, you know, it’s like, let’s take two people, let’s take a white person with cancer and a black person with sickle cell, who’s going to get the best respect? It’s not going to be us. – At all.

Dr. von Gunten: I would think that – would make you really mad.
Yes.

Dr. von Gunten: Yeah.
Very. And… to hear the sickle cell population when I go to support groups or conferences or whatever, that’s pretty much what they think, everybody thinks, “Well, if I had cancer, they would treat me better.” And that’s sad. The fact that you need help, you should be treated better. But you can’t change everybody.

Dr. von Gunten: Thank you for saying that out loud.
(chuckles) You’re welcome.

Dr. von Gunten: Because you saying it out loud, it’s going to have a different impact than me saying it out loud.
I hope so.

Dr. von Gunten: Well, I believe it’s true but me saying it hasn’t worked clearly, so.
(chuckles) – Yeah.

Dr. von Gunten: Maybe from you. What advice do you have to nurses, physicians taking care of sickle cell patients?
Take care of them from your heart. There’s a person hurting. Take the color away. They’re in pain. And the fact that mine are 24 and 25, you have to realize, they’ve had this for their whole entire life. They’ve been on these meds their whole entire lives. They’ve built up a tolerance. So what normally works to kill a horse, doesn’t work for them. It takes more.
And when they do present to the ER because the home meds don’t work, trust me, they don’t want to be there. My youngest daughter would rather be at work, making money than being in somebody’s ER to be treated like crap. And she’s told them, “If you’re not going to give me what I need to get over this crisis, I’ll go home and I’ll just take my pain meds at home, what I normally take.” And that’s what scares me. You send somebody home with their home regimen that’s not working, what do you think they’re going to do? I’m scared half to death that my two and any other sickle cell patients will turn to illicit drugs just to get some relief. And isn’t that what they want to get rid of? The opiate abuse? You’re pushing them right to it. I’m sorry.

Dr. von Gunten: Don’t apologize. It’s good to know what… a mother’s worst fear is. We need another tissue.
I’m sorry.

Dr. von Gunten: Don’t apologize. It’s that important.
It’s my biggest fear.

Dr. von Gunten: Yeah.
Thank you. That’s my biggest fear. (sniffles) They go somewhere to get help and they don’t get it. I mean, what, how much is heroin on the street? I don’t know, I mean, it’s cheap. They need to understand they’re pushing people to do this. Like, when did they decide pain was the ̶ what?

Dr. von Gunten: Fifth Vital Sign
And then now, it’s …. You did this! You just kept ̶ not you. (laughs) But the medical system at Children’s Hospital, with my youngest, Brianna, they just kept pushing and pushing and going higher and higher, and higher. I’m like, “Stop! You have to stop this.” Then it got to the point they got her such a high dosage that now they didn’t want to take care of it anymore, they had to send her to the pain clinic at Children’s, I’m like, “You did this!” So she, at one point, was on 24 milligrams of Dilaudid every four hours for pain and would go to school on that. So if you’ve been on 24 milligrams every four hours for pain and you want to give her a milligram, really? So we got to the point where we weaned her off because she even didn’t want to be that high on it, that high of a dose. We got her down at 4 and everything was going well, and then now that she’s back up to 8 but she refuses to go any higher. And I commend that for her. Yeah, they did this and that makes me angry.

Dr. von Gunten: Sure.
You make it the Fifth Vital Sign and now you don’t want to take care of it. Oh, well. They go home at night, I sit and worry. They go on their vacations and trips, I sit and worry. I’m sorry.

Dr. von Gunten: I don’t want to interrupt the tape catching this because it’s gold.
I’m sorry.

Dr. von Gunten: I’m sorry too, I wish it didn’t happen.
Yeah, me too. Stupid old cells turned into crescents. (chuckles)

Dr. von Gunten: Alright, anything you want to make sure to mention before we finish?
Listen, listen to your patient. Look at the chart. Don’t just brush them off, I mean, I know you’re busy in the ER but if you’re coming in to see them, see them. Don’t look over them, don’t look past them, see them. Help them. That’s it.

Dr. von Gunten: Thank you.
(laughs) You’re welcome.

Dr. von Gunten: Thank you. Alright, I think that’s a wrap.
I didn’t want to do that.