Carlos Smith, Living with AIDS & Pain

Dr. von Gunten: Tell me what you understand about your health right now.
I’m not quite sure what you’re asking. (laughs) I know where I, like… With my liver disease, it is… The damage has been done, and it’s getting worse. And eventually, they will have to pursue probably a transplant, but at this point, we are just tagging the numbers and waiting to see.

Dr. von Gunten: Anything else about your health overall?
There’s been, like I said, I could go… It used to be once, maybe every third month to get iron because of the anemia. But now, I’m going every other month, and that’s a two-part there. And then, usually after that, I’ve got to go into the hospital, and then they give me two units of blood because no one knows where it’s going, but I keep losing blood every so often.

Dr. von Gunten: And do you have a sense of the underlying reason why all these things are happening to you?
I think I do. I mean, like I said, the first part of it is my being HIV positive and kind of moving towards AIDS. My immune system is so weakened, it doesn’t take much to just knock me out. (laughs) And that’s what happened. Like I said, it was almost two years now because just one kidney decided to flush too much potassium and next thing I know, I’m waking up and I can’t move my legs, I can’t move my arms. (laughs) Very scary. (laughs)

Dr. von Gunten: I bet it was scary for your doctors too.
I don’t know. (laughs) Sometimes I don’t feel like they look at it that way. It’s more like surf and turf. (laughs)

Dr. von Gunten: What do you mean by surf and turf?
I usually go to one doctor, and they don’t want to deal with this, so they send me to a specialist. (laughs) And so I have like… I think I have eight or nine doctors now, and they all have a piece, but none of them want to talk to each other to understand how one’s making the other part of me sick.

Dr. von Gunten: So, what’s the effect on you?
The effect on me is, I lose weight, I don’t eat, and most of that is because of the pain. Once I go to eat something, it just kicks in, feels like someone’s stabbing you constantly, and it’s very tiresome. It’s like I’d rather not eat and go through that.

Dr. von Gunten: Sure, so tell me more about the pain before I had a chance to see you.
Oh, God, that was… (laughs) Before you, it was a lot of years of going to the pain doctors, and they say that’s where we should be going, but I’ve been to eight different pain doctors and not one of them ever talked about controlling the pain. I always had a set amount of medicine that they would give me each month, and it seemed like every facility, every doctor I went to see, they wanted to cut it in half, they wanted to knock me down. And I was like, “But I’m still in pain. I’m not able to do these things.” And they just didn’t pay attention, they didn’t want to listen.

They look at me because I’m so young (laughs) as being the pill-popping, doctor-surfing, trying to get… And it’s like I never did that. (laughs) I just needed medicine to get through the day, and there’s a lot more of this out there. I actually even had one pain doctor look at me and go, “You know, your type of people are the problem.” And then he said to someone I knew in the clinic who was older, “Oh, she’s a good client because she’s older.” She sold her pills all the time, she didn’t take them. So, looking at a person trying to decide whether they are on the bad side of it or the good side of it, it’s like you can’t judge them if you’re not willing to sit down and talk to them. That pain doctor didn’t want to do anything. (laughs)

Dr. von Gunten: So, it sounds like it was pretty hard for you to be treated like that.
It was, I mean literally month to month, it was horrible because you didn’t know if you were going to need the medicine, you didn’t know if you would be able to eat. And I was like, “These are just daily basics I wanted.” And I told them three times, just get the pain under control so I can live, I mean, who the hell wants to live like that? (laughing and sobbing). I told you I should take my antidepressants sooner.

Dr. von Gunten: Do we have a box of ti…
Oh, I do, I’m fine. (laughs)

Dr. von Gunten: Let’s have it handy.
(laughs) (sniffles)

Dr. von Gunten: Say more about what the pain was feeling like. When you started the day and going through the day, what was the pain like?
As soon as you get up in the morning, everything’s stiff, it hurts. I’ve got that mild stabbing in my stomach, and then like I said, as you start progressing through your day, if I want to eat, I have to balance out my pills, so I make sure I got enough to cover the meal. But even that doesn’t help. Sometimes you’ll take it first, then you eat, and you still end up in turmoil. (laughs) And other times, it did help. But trying to get a doctor to listen that I needed something different, but I didn’t necessarily want you to hand me the pharmacy. (laughs) I just needed someone to say, “We understand your pain, we can help you,” (laughs) and they don’t do that.

I had a doctor, she just couldn’t wait, she was Asian, and when I walked into her office, she’s like, “We’re going to take you off all your pain pills, and I’ll make you a tea.” A tea? It better have pain pills in it. (laughs) Because it was… Oh, God, it was scary. So, every month, I made myself sicker, wondering if this is the month they’re going to flip me to another doctor? (laughs) And that’s what he did. He had three… If you had three problems, he’d drop you. The first one, he said, I was on Valium, I said no, I’m on Clonazepam, which is in the same family, that’s why it showed up. And he argued with me over that.

Then I had surgery, and he said: “Have your surgeon call, and we’ll allow him to up your pain medicine for recovery time.” Well, that doctor didn’t call, and my pain doctor never called, so those two never talked, and I got my third ding and out the clinic I was. Then you go back to your doctor, and you’re like, “Please, please, please, help!” (laughs) And then they do another referral to a pain clinic, and it’s just… They’re horrible. And I said “Jesus, is there… and in 10 minutes I can tell you who offed some of my pills. They’re all on the phone. “I got to the pharmacy, I’ll be there in 10 minutes.” (laughs)

Dr. von Gunten: So, you can tell that you’ve been sort of labeled as somebody like that.
They actually put something in my charts over at Doctors West. I had my doctor take it out, I was so mad. I’m like, “I’m not drug-seeking here.” And the only time I went to the emergency room, every time I didn’t stay in four or five days. It’s like, so… But like I said, it’s my age, they look at me as being younger when I had all my teeth too. (laughs) And… For me, I should be able to get through the pain and have a wonderful day, and it’s like, it doesn’t work that way.

And with the liver, they don’t want me taking Tylenol. I can’t take the Aleve because it usually spikes my… my bilirubin. All that stuff in my liver goes up, and I get sick.

Dr. von Gunten: Sure.
And then we’re back in the hospital again dealing with another doctor who wants to tell me I’m on too many pills. (laughs)

Dr. von Gunten: So, let’s see if I’ve got this right, that you have advanced HIV disease and liver disease with a pain pattern that… There’s always pain in your abdomen, but it gets much worse when you eat.
Oh, God, yes. I mean, it literally feels like someone just takes your insides and just doing this. It’s horrible. Gas pains, people who had them before, trust me, when you have these problems, it’s ten times worse. And like I said, my partner has seen me many times just laying the floor in a ball, crying, because there was no relief, and I couldn’t touch my pills because God knows if I went there and I was short, I’d be reprimanded again and… (laughs) It just was a constant circus act.

Dr. von Gunten: So, I saw you for a pain consult, and we went through this history, and we’ve decided on increasing the amount of the opioids you were taking for your pain control. What has that done for you now?
I just feel wonderful. Like I told you before, I went swimming for the first time in 20 years with my niece because I wasn’t in pain. I could get up and do things with her. Because it’s so sad that she’s so young, she just loves me to death, I love her. And we can’t do activities beforehand, when my pain was in control, that she has grown up now, and she used to go, “It’s okay if you’re sick. You can go home, we’ll do something later.”

Dr. von Gunten: How old is she?
She’s 14, but she has a developmental disability, but she’s a lovebug. And the second time when I was in the hospital, where everything was paralyzed, she sat there for a whole week. She’d play on her tablet, she’d talk to me. If I needed anything, she’d run and go get it. I mean, she’s just a blessing. And like I said, it’s so sad I couldn’t do these things for myself. I had to rely upon my niece to do them. And like I said, it takes a toll because you can see her now, and like I said, she’ll pat me and she’ll go, “You don’t look well, Uncle Carlos.” (laughs) They’ve got their own problems. And when I found out that she was having meltdowns at school because I was in the hospital, oh, that’s horrible. It’s like ripping your heart out. (laughs)

Dr. von Gunten: So, it sounds like your niece is like a child to you, like your child.
I always tell her she was my little girl that I never had. (laughs) She goes, “Can I call you Dad?” I said, “You can call me anything you want, sweetheart.” (laughs)

Dr. von Gunten: So, it sounds like that’s one of the reasons that you… A reason for living. A reason to want to be functional is for your niece.
It is, and like I said, my mom’s raising her, she’s got guardianship, and she is getting close to her 70s. And she’s aware any day now, she could die, and then I have to jump in and I’ll become Mr. Mom and handling the finances and schools and all that. And like I said, beforehand, I was lucky to vacuum the floor in a day, sit down in my chair and rest, which usually took about an hour. Then I get up and maybe I’d do the mirrors. And just to clean, my God, it’d take a week. By the time I got done, it was time to start again.

Dr. von Gunten: So, on the increased amount of the opioids, your life is better, you are able to function more.
It has been, like I said, wonderful. I can go to a restaurant, mostly now and eat without regurgitating, and oh God, some of the sounds that come out of me are horrible. You know, it was embarrassing.

Dr. von Gunten: I always remember when the pain was bad you would throw up.
Yeah, and I had the surgery to stop that and I’ve blown it completely, it’s useless now, because of the medicines. (sniffles)

Dr. von Gunten: So, what was the difference? You were seeing numerous pain docs before you saw palliative medicine, and it wasn’t working. Compare and contrast how you were treated by palliative medicine versus the other pain docs.
Like I said, every time you go to a pain clinic or you see a pain doctor, their goal is to get you off the opioids, which I would… that sounds wonderful, but I’ve got a chart in there, I’ve been on the gabapentin. I’ve tried all kinds of antidepressants, anti-seizure medicines, anything to try to take care of this, we’ve already done it. Opioids got to be the last step, there were nothing else out there. But like I said, when you go to the clinic or see a pain doctor, their goal is to get you off of them, and that just irritated me. Or if they thought they were just seeing you for a consult, that I always loved, “Oh, I think we need to up this medicine and this medicine and get you on that.” Then when you go back the next month for your actual prescriptions and to see him again, he’d be like, “Oh no, we’re not doing that. I want to cut you off of those.” And many times, I had to tell my partner to go outside, because he was ready to rip someone’s head off.

Dr. von Gunten: Now, I’m remembering we got you on… a higher dose of the opioids seemed to be working, and then we passed it off to your primary care doc, so she would be the routine prescriber.
Mm-hmm.

Dr. von Gunten: How has that gone?
It’s been wonderful. Because what we do now is I go in every three months, and she sees me physically, and we talk about things and take care of any issues at that time. And then the other two months, I type her a little message through the OhioHealth System and tell her what I need, and she just tells me what date you come pick it up. So, I’m not getting pills early, I’m not getting them late. It’s just… it’s been so convenient, I’m just waiting for the shoe to drop, I really am, I know that sounds horrible, but it’s like this is too good to be true. (laughs)

Dr. von Gunten: And I’m thinking that was six months ago when she took over.
Yeah, it was last summer.

Dr. von Gunten: Yeah, so I think it was October, was it earlier than October? It was still warm.
Yeah, it was warm.

Dr. von Gunten: So, it’s at least six months. And what I’m hearing is the dose hasn’t changed.
No, I haven’t asked for anything. I don’t need anything, and that’s the nice thing about it.

Dr. von Gunten: I think it’s important that once you found the level that controlled your pain, that dose hasn’t changed. It’s not like it’s continued to go up, it’s stayed…
Well, and that’s like the patch I wear, the fentanyl. Before that, they would give me the OxyContin, which is 12-hour acting. The problem is, with all my stomach issues, I don’t digest food and I don’t digest some pills because I was taking them and finding them in the toilet, and you break them open and all the medicine was right inside, and I’m like no wonder I’m in so much pain. Now that you’ve given me, I’d be lucky if one day they’d hit, one day they didn’t.

Dr. von Gunten: So, you’re taking the fentanyl patch, and then you’re using the oxycodones for breakthrough pain. – Is that right?
Correct. I use them for breakfast, lunch, dinner, and then if we’re going to do something.

Dr. von Gunten: So, you pre-medicate before your meals.
Sometimes, yes.

Dr. von Gunten: Because you know the meals are going to hurt, so you use them before, because they’re short-acting, to get you through the meal, but then they don’t hang around. And you’re able to go swimming and…
We get to do all kinds of things now. And as I was telling them, it’s her spring break, so she’s coming over, I’ll get her tomorrow, Wednesday, and she’s staying through Saturday. And we just have all kinds of things planned. We’re going to go to play video games, we’re going to go to the theater, we’re going to cook. It’s just wonderful that for the first time, I’m not worrying about where does this land in the month. That “Oh, I can’t take Evie now because I’m down to my bare minimum pain medicine.” Or, “I can only do one week out of the month because I know I can control the pain,” but then it has to come from somewhere and that usually shorted me towards the end of the month. So, in the month, I was sick and didn’t want to do anything. But I guess that the new regimen has been wonderful. I could just… It’s nice to actually have some time out of pain.

Dr. von Gunten Uh-huh. That sounds like a core thing that’s really important to you as a patient, is being treated with respect.
I do because when I first diagnosed HIV positive, the Gay Men’s Health Center in New York had put out a book, and they just happened to have one left here in Columbus, and what it does is it talked about you’re now your doctor’s partner, you need to know everything you’re on, you need to discuss everything you’re on, and it’s the same way with like… If you drink, if you get street drugs, if you… You know, you’ve got to let them know everything so that then there’s no surprises.

But we had that issue just recently where I was getting an endoscopy, and I kept telling her, “You didn’t put my patch on my medicine list.” And she goes, “Oh, it doesn’t matter.” And the anesthesiologist happened to be next to us, and he goes, “Yes, it does, because I’m going to give him pain meds while he’s under. And if he’s already got some, I don’t want to overdose him.” (laughs) So that’s become reality now. I have Narcan, and I’m lucky to get eight of them. So, I keep one in the car, one at this house, one at my mother’s house, if something happened, and I’ve trained my niece how to take care of it.

Dr. von Gunten: Wonderful. Well, I’m remembering you have an impressive medicine cabinet in your kitchen.
I am a junior pharmacist. (laughs)

Dr. von Gunten: I think one of the things that people don’t recognize when you’re sick or somebody like you, seeing so many specialists, all the medicines that have been tried or that you’re on, because I remember you’re on an impressively long medicine list.
Yeah. (laughs)

Dr. von Gunten: Does one of our cameras travel?
(woman1) It can. (laughs)

Dr. von Gunten: Carlos, would you show them your medicine chest, and will somebody just go film his medicine chest?
Oh! (laughs) I guess he was also. (laughs). Thank you.

Dr. von Gunten: You forget it’s there. There’s no need for me to go. I want you to just show her your chest.
This is the mini CVS. (laughs)

(woman1) Wow. (laughs)

The front row is what I take every day. The next two rows back are the medicines…Sometimes, they’re the ones I don’t take as often, or they’re the refills, so the refills go all the way back because I have to cycle them to get the old medicine taken first so that the new doesn’t expire. But yeah… (laughs)

Everything from my HIV meds to nausea medicine. I have three different nausea medicines, but the new one is at my “testy” It’s something we’re going to give it a try, I’m looking forward to that. (laughs) But yeah, I can go to the CVS and talk to them, and they just giggle because I know, I can look and tell them what drugs are on their shelves because they’re at my house. (laughs)

Dr. von Gunten: All right, thank you for that.
(Carlos) Okay. (laughs)

Dr. von Gunten: I think most doctors have no idea what it’s like to be at home managing the medicines, and I think it’s… I saw your jaw drop, Lisa.
(Lisa) I did not get off the [inaudible].

Dr. von Gunten: If you were talking to doctors, wanting to help them take care of people like you, what would you say?
I guess, and it’s always been the issue, you’ve got to sit down and take a little bit of time to talk to your client or your patient, because if you don’t talk to him, you’re not going to know anything. And that’s where I was getting with the book. The HIV book told me what I needed to be doing, so I am a partner with my doctor. Not that I go and let my doctor just prescribe anything they want. Because “Oh, well, let’s try this.” No, we did this, it sent me to the emergency room. It’s not a good drug for me. Or, like I said, my liver was acting up, and at one point, they had pumped too many medicines into me, and I guess I was delusional, running around the hospital naked. (laughs) So, you know, you’ve got to take that time and talk to him.
And most people, if you… or at least I feel this way now, because in my 20s, and probably to 32, we used to go out to the bars and we’d have fun, and I drank, and we would do a little bit of recreational drugs. But that’s my past. I currently don’t drink, I don’t use drugs, I don’t smoke. (laughs) There’s no other things that I can be into.

And like I said, most of them won’t take the time to listen and get your full history and understand. And I don’t know, I really want to grab all my doctors and put them in one room one day, a year, just to talk and see what everyone else is doing because they don’t. I get copies of everything, and I take them to each doctor and pass them out.

Dr. von Gunten: Carlos, thank you for being this frank about yourself and your situation. And I’m so glad things are going well now, knock on wood. I’m sorry you feel like the shoe’s going to drop.
And thank you for being a good doctor.

Dr. von Gunten: Well…
You really have helped.

Dr. von Gunten: Well, and that’s a lovely thing for a doctor to know that he’s helped, so I’m really grateful. Thanks.
Thank you.