In Our Blood

Dr. Chris Dentons Perspective

Sickle cell Season 3 Episode 6

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0:00 | 58:32

Chris Denton, a doctor at Seattle Children's Hospital, shares his story and view on prescription medication. Tune in to another informative episode on the struggles of addictions VS depandancy.!

To learn more visit www.mssctf.org. 

SPEAKER_00

Thank you to all new and old listeners for tuning into the third season of our podcast, In Our Blood. A special thanks to the Metro Seattle Sickle Cell Task Force and the Best Starts for Kids for sponsoring another year of insight into the world of sickle cell. This season we will be diving into the subject addiction versus dependency. So let's hop into it. As you all know, season three is about addiction versus dependency. Here with me we have Chris Denton. Chris Denton, do you want to introduce yourself? Maybe tell you what you're into, sports, TV show of the of the week, or you know, and then before we get into the happier subject here. Sounds good.

SPEAKER_01

My name is Chris Denton. I'm the medical director of the single cell program at Seattle Children's Hospital and Odessa Brown Children's Clinic. I am originally from Kirkland, Washington, and I did my residency at Seattle Children's before going to LA for a number of years to advance my training. And I'm back up here at Back Home, which I'm really excited about. I'm a big Seahawks fan, so it's really nice to be around Seahawks fans again. I am a long-standing Mariners fan as well, but have also appreciated the ups and downs. I like snowboarding for my own sport, and I'm also a runner. Anything that can get me outside or my interests, I would say. I also have two cats who might chime in during the course of this meeting.

SPEAKER_00

Yeah, I believe I saw one of them before I hit record the record button here. Exactly. What are your cats' names?

SPEAKER_01

They are Swayze and Gray, after Patrick Swayze and Jennifer Gray from uh the movie Dirty Dancing, which is one of my wife's and my favorites.

SPEAKER_00

Oh, nice, nice.

unknown

Yeah.

SPEAKER_00

Yeah, that's those are those are nice names. I think I like the name Swayze a lot. I don't think I've ever heard heard that before. But yeah, I thank you.

SPEAKER_01

Yeah, it it fits him too. I think when initially when we made them gray, it looked a lot more gray than her coloring now. And Swayze always just kind of swayed something. Yeah.

SPEAKER_00

Got a little pep in her step. That's great. That's right. Gonna hit you with another question of the week. What is a place outside of the US that you feel you would like to live in if you had the choice to?

SPEAKER_01

The first place that comes to mind is Tokyo, Japan. My dad lived there for a few years while uh due to work, and I got to visit him a couple times during that time. And my wife's mom is from Japan, and so we've we've gone there um with her, which is amazing, and there's so much to explore. I love the food, I love the people, and uh the history there is incredible. So I think I could I could spend a lot more time there for sure.

SPEAKER_00

Yeah, that would be cool. I feel like nowadays it's like really common, especially within the youth, to be like, I want to go to Japan, I want to go to Tokyo, Japan, you know. Yeah, I think it's a cool place, I think it would be a cool place to be. I personally have never visited anywhere outside of the US unless you want to count like Hawaii, I guess. But that's still technically in the US. Off the mainland. Yeah, I feel like I feel like Japan is a nice place again, and I feel like you get, depending on where you are, that you get to experience like all the seasons and all the different types of climates. I just feel like it'll be a cool place in general, you know. Yeah, absolutely, absolutely.

SPEAKER_01

I've I've been there a few different times of the year, and every time offers something different. The cherry blossoms in the springtime are really beautiful. The snow, especially in the northern part of Japan, is incredible. I haven't been spent too much time there in the summer, but overall I think the climate is is fairly similar to what you get in Seattle, which I like. Yeah.

SPEAKER_00

Get to experience all four seasons. Yeah. Exactly. Yeah. And yeah, you're all right about their history. They do have a very rich history. Did you know they're the first people to cultivate salt? Like set up. I did not know that. Oh my gosh. So we saw us and all the rest of that, too. That's cool. Wow, that's another another note of gratitude to Japan then. Yeah. Exactly. Yeah. And then it became one of their one of their main revenues of trade for a while.

SPEAKER_02

So yeah. That's a really fun fact. Yeah.

SPEAKER_00

Alright. Well, now I need to get dig into your brain and get all the facts that I need from you. So we're going to go with the with our first question of the day. And it's just a basic question. Just I want you to share a little bit of your story and how you became a practitioner. For sure.

SPEAKER_01

I was initially interested in medicine because I thought it was a great intersection of sciences and humanities. I think I was initially thinking I was going to be an engineer. And then my uncle thought that going into biotech was the, you know, the wave of the future. And so he wanted me to be a scientist. And I spent a little time working in a lab and I just decided that I wanted a lot more human interaction. And that led me towards medicine. And it was during my time in medical school that I met the first patient with sickle cell disease. And I saw how much pain they were experiencing at the time. I also started learning about the cultural background and all the barriers and obstacles that patients with sickle cell have faced. And it really indicated to me that it's a field where I hopefully would be able to make a lot of impact, if not in, you know, the full scientific community, at least for any one patient. I thought I could potentially do a lot. And that feeling was further, I think, grown while I was in residency. And I had a chance to see a few other patients while I was here at Seattle Children's Hospital. And I I actually had an experience in particular where I felt that I personally did not do well enough in caring for a patient. And so it gave me a further personal drive to want to do better. And that led me to want to really focus my training on Sickle Cell and get some additional experience. Every step of my training, I wanted to go somewhere different just to kind of expand my horizons and learn what it's like in a different place. And I was hopeful when I left Seattle to go to Los Angeles that one day I'd have the opportunity to come back. And fortunately, I I did get that opportunity a couple of years ago. And here I am. I was just, you know, I was just a but like a worker bee before. And now I've got a little bit more say in, you know, where we go with things and how we want to focus our resources. So it's it's exciting, but it's uh there's a lot of new challenges as well.

SPEAKER_00

Yeah, I bet. I'm sure there's a lot, tons of new responsibility put on your shoulders. And yeah, I just feel like I should say, you know, we appreciate you becoming a he I'll say this. We appreciate you becoming a heatologist. You know, you come in, you you make mistakes, and I feel like that's just like how things are supposed to go. And it's something that I feel like most people or a good amount of people won't experience because most people or a good amount of people in in their life when they have a career, it's not really so focused on people. You know, they make a mistake, they move on, and that's just how it goes. But it sounds like that that kind of switch that you had was one that actually ended up benefiting a lot more people in the future. So kudos to you for that. And you know, people make mistakes, but we're glad you you kept going through it and chose to be a hematologist because you're helping people out like me. So definitely, definitely appreciate that. Thank you.

SPEAKER_01

And it is a privilege to uh to care for and and work with people like you and to be in this field. And with every person I get to meet on along the way, I learn something new and it teaches things about me and about humanity, about pathophysiology and culture. Um, and yeah, it's I I feel extremely privileged to to be in my role and to get to work with people. It's it's it is pretty special. It also I I think is very clear that it is a very unique position to care for someone who they're in who's in their their most vulnerable state, I would say, from you know being either admitted to the hospital or seeing me in clinics. So I also recognize that the the trust that people have in me is uh very significant.

SPEAKER_02

So I don't take that lightly.

SPEAKER_00

Huge. Yeah. And you know, that's why we like to get the respect of of our medical professionals because you guys are the ones who, like you said, see us at our lowest. And you know, if we don't know your side or if we don't know we I mean a lot a lot of times it's easy to forget that you guys are like human too and have to see us suffering. Um I know that from perspective as a patient. So yeah, it's just kudos to you. You what you do is huge. And you know, making those mistakes are important because that leads you to do better and care more. So yeah. I I personally was thinking in my life that I wanted to become a marine biologist. I was really excited about that. I still maybe might, who knows? But I remember specifically choose or thinking about becoming one because I knew I probably care for the animals more than I would the humans. So you know, like you just gotta make sure that you land in some some point where you do your best work where you where you feel like there's passion towards it, where you feel like there's something to be lost if you do your your job poorly. So yeah, definitely.

SPEAKER_01

Yeah. Have you have you speaking of marine biology, have you checked out the the low tide that we have right now? There's I haven't I haven't been out yet, but have you? You've you've you've gotten out to beach or something.

SPEAKER_00

I saw that it was happening, but I have not went to go check it out. I do want to check it out. Yeah, that'd be awesome. Yeah, and go find some critters on the beach, that would be fun. Yeah, yeah. You can't do that too many other places where you could just go out and pick up crabs and stuff, you know. I know things, yeah. Yeah. Speaking of responsibilities that you had, going back to that, are there any new alternatives to opioids that are coming out or have been out that you feel like should be on people's radar?

SPEAKER_01

It might not seem so new at this point, but I think etamine is being incorporated into management of sickle cell vasoocclusion a lot more frequently. It's dissociative medication. I think it would qualify as a hallucinogenic, and it is, I think, a way of approaching pain just as another modality to hopefully hopefully reduce opioid exposure. Uh, there are some centers who, in addition to using opioids and ibuprofen or catorolac, which are the non-steroidal anti-inflammatory drugs, the kind of additional medication that is routinely given is ketamine. And I think it does have some limiting factors. I think the the biggest side effect that can, I think, be a problematic for patients is that you you can get hallucinations on it and it can make you feel a little bit uncomfortable in that way. Um, but I have seen a lot of success with it, and especially in patients who are finding that their opioid dose is sort of at the upper limit to the point where the therapeutic benefit is lost and it really is just getting into the toxicity associated with opioids, or if there's another reason why they cannot have opioids. Then another medication that we are starting to prescribe more frequently, especially for patients with neuropathic pain, is called buprenorphine or suboxone as the brand name. I don't know if I'm supposed to say brand names on this, but anyway, and it's a partial opioid agonist that generally has been used similar to methadone for patients experiencing substance use disorders. And in this case, it's not necessarily being prescribed for a substance use disorder, but more for neuropathic pain and where opioids are not really indicated, or at least not as much, because the concern with continuing opioid therapy when you have neuropathic pain, which I basically describe as nerve damage that has led to abnormal nerve regrowth that then gives either intensified or abnormal pain signals to the brain. And when I describe it, it might sound like I'm saying it gives you pain in your head and it's just in your head, which is what um some patients have responded to me when I've described it that way. But I'm really trying to make it uh clear that with neuropathic pain, it is still pain, but it is not due to acute sickling. It's it's really just um the nerves just causing continual pain sensation. It's nerve damage.

SPEAKER_02

Yeah.

SPEAKER_01

It's yeah, it's it's nerve damage causing that problem, unfortunately. Yeah. And unfortunately, neuropathic pain affects about half of patients with sickle cell by the time they're adults. So it's a pretty significant problem. And um in some cases of where patients are having chronic pain, they could be on chronic opioid therapy, but unfortunately that leads to tolerance and potential withdrawal and the additional toxicity that could occur when you are tolerant again to the therapeutic benefit, but not so much to the toxic side of things. And suboxone can be very effective in providing chronic pain relief without a high amount of opioid exposure. So I don't personally have training in suboxone prescribing. It is considered a controlled substance. So I do have a DEA license that allows me to prescribe opioids. So I could prescribe Suboxone. But what we're hoping to do is to get more training for myself and other providers, at least with our in our program, so we can make suboxone more available to patients because we do see a lot of benefit at this point in time. Well, by providing what we call a partial agonism of the opioid receptors, it is still addressing the pain that you get from that helps that opioids in general will help with. But instead of giving the full effect of the opioid, it is only partial so that you're not fully saturating your the mu opioid receptors, which are the ones that transmit pain. And it therefore makes it so that you are not really needing to take as much of your opioids. You're giving sort of a chronic background effect that is kind of the, I guess, the Goldilocks effect of giving like just the right amount without causing toxicity. And because it's used chronically with only partial opioid agonism, and agonism just means like activation of that pain receptor, um, then there's less likelihood of there being tolerance to it. So it it becomes more beneficial than using a chronic opioid-like oxycontin, for example, which is the you know extended release oxycodone.

SPEAKER_00

Interesting. Wow. That's interesting. I don't think I've heard that one before. So I'm glad you were able to give me some insight on that. Um with nerve pain, because I remember for me growing up, I did have to struggle with that nerve pain at some point. And I did take it as like it's my fault, like I'm internalizing it in my head. And that's typically because a lot of the solutions that is provided is work that needs to be done in your head, although you may feel it some other place. I feel like it's important for people to remember that your nerves are throughout spread out through your body, and although they may be damaged in some areas, you're receiving that signal in your head, and the only way to fix it is by making sure your brain knows hey, this is how we can do better. Or when you take the medication, it'll all start either you're receiving the information that you're in pain in your head. So I remember being on gabapentin was the medication that I was prescribed to. And during that explanation of gabapentin, it confused me, making me feel like it was like solely in my head, and that is why you know I was in pain. But it's all it's all I feel like it's important that people remember that it's all connected and that your nervous system is just as important as the rest of your system, and that it's something that can be fixed or can be addressed through, I guess, what people perceive as their head.

SPEAKER_02

So yeah.

SPEAKER_01

Yeah, that's that's true, and that's a good way to look at it because you know, things like cognitive behavioral therapy, speaking with a psychologist who has specialization in pain management, so commonly called a pain psychologist, or doing things like biofeedback, which tell you a little a little bit more about you know just what you're how to respond to what you're feeling. Um acupuncture can be really effective as well. So using kind of complimentary and alternative medicine. Gabapentin is a common one that's given, and neurontin or lyrica can, or I'm sorry, pregavalin, which is called lyrica, is another one that works similar to gabapentin. And it's true with all of these interventions, it does sound like it's in your head, but it's true too that it's it's all related to nerves which are throughout your body. And it's it's more of a question of you know, what's the trigger that's activating those nerves? Right. Because a vasoacclusive episode can trigger the sensation of pain, but um the the uh pain signaling itself can be abnormally triggered to kind of just turn on. So it's it's trying to figure out like what's causing that that on switch, I guess. Sorry, go back a little bit.

SPEAKER_00

In a vasoacclusive episode, what is that?

SPEAKER_01

Yeah. Sorry, I know. Long word. That's that's how I would describe what's happening when your red blood cells have become a sickled shape in in some woman's sickle cell, and they are getting stuck within the blood vessels and sticking to each other and causing an occlusion, so blockage within the blood vessel. And that blockage leads to inappropriate um blood flow and inappropriate oxygen delivery in your wherever it's occurring, and that can give a sensation of pain. And um how it feels is something that I would have difficulty describing because I I don't I can't have that experience not having sickle cell myself, but that that is what's I think physiologically what's occurring is that there's there's blockage within a blood vessel, and that leads to pain from that from that blockage. So vasoacclusion is a very scientific way to say vasovessal occlusion blockage, so vasoacclusion.

SPEAKER_00

Like some I'm in a crisis, the best believe that's what I'm saying. I'm having an vasoocclusion episode, right now.

SPEAKER_01

Yeah, having a vasoocclusion episode, yeah. And yeah, and I I don't know if you've noticed this yourself, but there they're also, I think, in in our vocabulary, a lot of the um the medical community for sickle cell management has adopted a vasocclusive episode, what rather than a vasoocclusive crisis, because crisis has been used for a I think a long time. And some patients find a little bit disturbing when you say crisis because it sounds like we're in a lot of trouble, and you know, what are we gonna do? But really, it's an it's an episode that we we we do know ways that we can manage. And hopefully just the way we define it might make it seem a little bit less scary.

SPEAKER_00

There's no reason to stress ourselves out over it.

SPEAKER_01

Yeah. Yeah, yeah. It's not exactly better. Yeah. Unfortunately, no, but back back to your, you know, what's what's in your head that there's there are is a lot of stress and anxiety around pain. So I I totally appreciate that it is a very stressful situation, and your your mental health, I think, is really important uh to consider as well.

SPEAKER_00

Yeah, it is. And I kind of have a question. Basically, I'm just asking that back towards you is what do you feel like is the hardest part about being a practitioner in the hospital in a hospital setting for you?

SPEAKER_02

Um well, if I compare that.

SPEAKER_01

to being in the clinic, um I it's it's hard because we're we're seeing patients and and people when they're when they're not well, you know, when they're not at their at their best. And and that's really tough. They they can the severity of their illness can vary from you know a medical diagnosis standpoint. But for whatever the severity is, however you define it, it it could be the worst day of this person's life. And that's that's really sad. You know, it it is a it can be emotionally taxing because I would like to say that I exercise emph empathy with with all of my patients and and that empathy can um be sometimes a little bit tiring because you're you're trying to to be in your patient's shoes and you're trying to imagine what they're experiencing and what they're experiencing could be really bad. And um you know we we do that for multiple patients a day and multiple days at a time. I don't I don't work for long stretches when I'm taking care of patients in the hospital inpatient setting um but for you know at least a week at a time and I am I am exhausted by the end of that week. And I'm not the one who's who's having these experiences. And you know I think personally too when you're in the hospital it's it's it's hard to to get to know someone. It's when I I what I like about my job is that I I do see patients in clinic as well. And and most of the time in clinic they're they're feeling better and I can you know talk about things that they're interested in and you know what they want to do when they get older and what they like to eat. You know more of the more of the fun stuff. And I also recognize too that from the patient's perspective aside from it being one of their worst days as much as we want the hospital to be a place of healing there's a lot that makes that kind of tough. You know there's machines beeping there's there's people coming in and out of your room all the time the lights are always on in the hallway you know there's there's things that are said that you might not understand. And um there's there's a lot that happens in the hospital that is is tough. So I'll take what my one of my mentors would say which is that anytime someone comes in the hospital their goal is to go home. You know the the reason they're coming into the hospital is so they can go home again. Right. And whenever they come into the hospital we should always be thinking about how do we get them home because that's that's where they need to be. And so we'll only keep them as long as they you know need hospital interventions. And as soon as that's done got to go home and finish healing there.

SPEAKER_00

Right. Yeah someplace where they can be comfortable on rest yeah right rest rest is really tough to get in the hospital. I recognize that yeah do you feel like that this is like a common topic within the field?

SPEAKER_01

Like do you feel like while you're at work and you're talking to your peers and stuff it's just like everyone seems a bit drained you know or do you feel like for the most part everyone's like okay like they're on task because I I personally like when I'm in the hospital setting it doesn't seem like much people or at least the employees are unless they're at the reception desk are typically happy oh really yeah that might just be but um well I I think generally I think people are um are energetic and they are there to do their jobs and I think for the most part people are are doing their passion and so that I think brings them a lot of inner drive inner drive I think you know burnout is a is a real thing and it's been discussed more and more as I've gone through my career, which is not very long, but you know from the time I was in medical school until now I feel like the discussion of burnout only increases. And there's a lot that I think goes into that you know the um expectations on the providers changing and you know incorporating things like our smartphones and different pager systems and and AI and um a lot of these things that are intended to make work easier can can also sometimes be a little bit draining in terms of um you know the the the constant call to to work. But I I I I would say too that I I I think what we should be showing our our patients is that we're we're we're positive and and ready to go. So I I'm sorry that you're feeling like people are looking a little a little haggard.

SPEAKER_00

Well it's not all the time but and for like when we're talking together it's not like everyone's bad it's just it's a busy setting it's a very busy setting. Yeah and I'd imagine there's a lot of hidden stress behind the scenes. That's that's true.

SPEAKER_01

And I don't know if you watched if you have watched the pit but I've been watching the pit. Okay yeah I like the pit a lot because I think they show a lot of the humanity on you know both sides from both the the patient's perspective and the medical provider's perspective. Right. And I I think mental health is important for everyone. And so I I think as much as we talk about mental health I think it's important too to recognize that we're all human and we're all trying to take care of ourselves as well as we take care of others.

SPEAKER_00

If you're in the hospital if you're listening now you're in the hospital put on some pit grab your nurse wash some wash some pit together I'm sure everything will be all right to dive into a little bit of a hefty question here. And I before I we we are all aware that you know when you do prescribe medication to to a child or someone who who needs who needs the help it is it is an active care but what are your thoughts and feelings when you are prescribing medication to a child where this you know it's a pretty hefty it's a pretty hefty drug you know it might be something that will change their life.

SPEAKER_01

I always worry a little bit about prescribing something new. I'm always you know looking at our formulary and checking the dose even if it's something that I've prescribed thousands of times I am really communicating with the family and the the pharmacy and the patient on you know what to expect. When it comes to medications that we use regularly in sickle cell for example I think it is hard when you know initially we we start with sort of common medications for pain like Tylenol and ibuprofen and when the pain becomes more severe then we start prescribing opioids which are a really a mainstay of of therapy at least early on before we if we're not concerned about neuropathic pain or toxicity associated with it. And I I think a lot of families do um feel a lot of stigma behind using medications like that. And when it with respect to those sorts of medications, I think I I really emphasize that when we're trying to manage pain, we have to get it under control as as quickly as possible because pain just builds on itself and getting back to the the stress and anxiety related to pain, if if you don't get your pain under control, then your your stress is going to increase and that's going to make your pain worse. And it just gets harder and harder if you don't get it under control. So using medications like opioids are actually very appropriate to get it under control. And I think where I've seen more problems is is actually when we don't use pain medications enough and then we're we're sort of chasing our tails trying to catch up with the the pain that's just worsening. So those are the kinds of things that I I try to emphasize. And I I also try to make it clear that you know the reason why we prescribe some of these medications in the hospital setting is that it's it's very well monitored and and safe and it's not something that we should have as much fear about. But you know nothing is without risk. And so I I can never say that like right I'm 100% sure nothing bad is going to happen. I I we have to be aware of these risks and and also you know what we would do if if one of them occurs.

SPEAKER_00

Right. You know there is a reason why it used to be called a crisis although we're not trying to trying to push that push that phrasing there is a reason why it will it used to be called a crisis and you know we are you guys are trying to you know calm our nerves and make sure that we are in a state where we can truly heal so it does make sense that you guys are doing that. And I feel like a lot of people need to remember that you are in a hospital it's not like you're getting drugs off the street and they're really gonna do something crazy to you unless you know someone abuses them but that is what you guys why you guys are there to make sure things are alright. So yeah. Anyway how do you how do you feel like you communicate to people about drug use? Like is there is there a discussion that you have is there resources that you're able to give I think I need to explore what additional resources can be provided.

SPEAKER_01

I talk about the medications that we prescribe very plainly because they're what we what we do sort of as standard. So I try to make it clear that it's not something that's out of the the ordinary in in terms of um just what to expect and and almost put things at at the same level as you know prescribing Tylenol ibuprofen vaccines antibiotics it's it's really just what is indicated and that I hope makes it seem a little bit less scary because it's what we prescribe. It's it's what is appropriate words matter I would say and another word that I have learned not to use is uh narcotic. Narcotic would suggest um a medication that is being used illegally I I think at least that's my connotation with it. And so I would not think of opioids which is a general class of of things that stimulate the the opioid receptor which are which are you know morphine and oxycodone and hydromorphone or dilatid they're all in a similar class um and they all are known to to really manage pain. And so when a when pain is is the indication for treatment then the the treatment includes the this array of medications and and we have like a a number that are in sort of our um our tool bag um and the the risks are important. So I I do talk about side effects as well and you know with with Tylenol I I talk about the risk of liver injury if we ever were to give too much Tylenol with the ibuprofen we are concerned about like reflux and gastritis and so usually we'll put a patient on an anti-reflux medication or acid blocker. With opioids we worry about respiratory depression and so anytime we're prescribing that for home use, we also want to make sure that a family has naloxone at home or narcan for the the risk of an overdose. But another important thing that we know as providers for this sickle patients with sickle cell is that that uh there's no higher risk of overdose amongst the sickle cell community than in the general population. And so that that's also important to consider is that um it's it's not something that is um misused or is more dangerous for for patients with sickle cell. So um right hopefully all of those things together just make it feel a little bit more routine I guess.

SPEAKER_00

Right. And from the perspective of one with sickle cell a lot of times it's you know when I when we see people struggle to get their medication or we see people struggling with overdose or things of that nature it never really starts well maybe it does start in the hospital through like our first consumption because we do a lot of people with sickle cell have been prescribed medication since they were a child. You know it's been a part of their lives. And it's that comfortability that people either take too far or circumstance makes it so that they've taken it too far. You know you could be on a medication for opioids for years on end and all of a sudden the medication you know isn't giving you give giving you the same relief that it used to when you were in a crisis and the next thing you know you're looking for something higher. And then that's really where I feel like the line between addiction versus dependency really really comes across not in the hospital but in in life in life it does it comes in life and it comes with time as some as a perspective of someone who's in sick has sickle cell and I've seen that happen to a lot of people and I've seen that in myself um so yeah I feel like that that's that's my perspective yeah thank you for sharing I want to note real quick sorry before you go into that for doctors the you the use of the vocabulary narcotics let's not use it anymore as Chris or not as Christopher says but as Kristen has learned through his experience. Thank you.

SPEAKER_01

We don't want to scare the patients away that's right yeah I I think it it is to me it's an important distinction with just what you said is that it's it's something that's prescribed for medical purpose in the hospital or you know in the clinic um so it it shouldn't carry the same level of stigma as something that you know is is purchased for pleasure or you know is is is uh picked up off the street. We are treating this for a specific medical purpose.

SPEAKER_00

Especially with your you know teenagers to young adults if they're hearing the words narcotic it's already an illegal drug that you're taking you know and that that it that already gave any drug is a gateway drug. So that already exception that this is a narcotic let me just slip into this let me just slip into that you're already in a very vulnerable state you don't really need to put those types of stigmatisms and ideals in their head so yeah appreciate your advice Chris thank you for sure yeah have you been in a situation where a child or an adult had become you felt like had was leaning on dependency over over dependency or addiction um and if so like how how how would you address that is there a procedure for how people would address that um yes and yes I've been in that situation and I would say the procedure is is difficult and depends a lot on how well you know the patient in terms of how how you are able to navigate it.

SPEAKER_01

I have taken care of some patients who were not previously oh boy see that was my cat I have taken care of some patients who were not under the care of of my group so that they they were you're you know being seen in another hospital or you know were coming in from out of state and had their own experiences and and ideas about what their um their needs were and I think the red flag signs were were that they were you know being seen by multiple providers in in different places and not sticking with with the a um a specific plan. They were you know requesting um higher and higher doses of of certain medications and so just you know giving giving a feeling that they were you know out um look looking for these prescriptions for a for a different purpose than than usual. And in unfortunately in in a situation like that, you know we we we can make our recommendations that they they get help from some kind of um outpatient program that can manage that um and at the same time we we cannot be their prescriber you know we we cannot add to their to that problem. That you know when it's so when it's it's a patient who we haven't met and they we we they're they have that experience they're not really under our care you know there isn't really an opportunity to help guide them further beyond that because at least in those experiences it's led to the patient you know leaving the hospital or or leaving our clinic and and and going elsewhere. And all we can hope is that with the the next step that they take it's to you know a a drug misuse treatment facility rather than trying to go to another provider who can give them what they're we're looking for at that time. On the other hand if it's a patient who's under our care and it's it's just that they're getting to a point where they're feeling like the only thing that's working for them is their is their opioids or any medication for that matter, then it takes a lot of coaching and a lot of support and a lot of visits to you know just be sort of firm and consistent with the messaging around the prescriptions that we would provide and what expectations we might have. Because I think you know a big part of managing someone who's who's become more dependent on their opioids is trying to find other ways to manage what they're using their opioids for and recognizing that if they're not going to do these other things and they're only going to do the opioids then you know we we again we can't really feed into that. But my my hope is that it doesn't lead to a a fracture in in the care for the patient you know a damaging relationship because it's not like we don't want to care for them and it's it's not like we don't appreciate that they're you know going through some hard times. But you know depending on their situation they there they might be upset by whatever we're we're recommending. So I I hope it's the latter situation, it's it's really hard, I think on both the patient and the provider but at least in that situation hopefully you have a relationship so that you can at least have have trust that the you know the the the the patient trusts the provider that they're trying to do their best for them and the provider trusts that the patient is you know gonna hopefully listen to their recommendations.

SPEAKER_00

Right.

SPEAKER_01

I hope that is helpful. I feel like I'm speaking very broadly based on the very it's a very broad I feel like it is a very no it's a specific problem but it's a very broad answer.

SPEAKER_00

It's a very broad response. Yes yeah um and we we have talked about this in previous episodes it is and I I'll highlight this again especially because this is something that is important especially during this season is build a reputation with your doctors with your caretaking team because it's you go in there and you do really want to leave you do really want to get out but building those connections with the people who can potentially save your life at some point or improve it is important.

SPEAKER_01

And you know you have to remember that when you go in there whether they're prescribing you you feel like they're prescribing you too much or too little you have to remember that at the end of the day they're trying to address your pain address your lifestyle and make it so that you can live things to the best of your ability so it's really important for you to build those relationships and build that trust between your practitioners going over the resources that and the process that you guys are allowed to go go over because we don't know that a lot of times we don't know that um so yeah let me take a look have you do you feel like you have had any meaningful conversations with your parishes do you feel like you could have that type of relationship with your patients to be in that sort of situation you can have an honest talk with it to be honest not yet I I think that what I've learned and what I just described were indirectly related to to patients that were under care of some of my colleagues and they've been taking care of those patients since they were very young. And you know that's another benefit of being a hematologist for a a disorder like sickle cell is that it's because it's a unfortunately a lifelong illness um it does allow for a a long relationship. And so that's something that I'm I'm really looking forward to Having um moved here and established my career here, is that um, you know, I'm I'm happy to meet you, but you're you're about to move into adult care. And I think I I am also looking forward to seeing my patients grow up and to develop that relationship along the way. And my hope too is that while there unfortunately will be cases where um substance use will be a might be a problem. Um hopefully we can provide all the education and and tools along the way so that the likelihood of that issue is is pretty low.

SPEAKER_00

Right. Maybe even one day you can send them this episode, you know? Hey, everybody. There you go. Yeah. We've been over this, you know. I just want to know you can talk to me, man.

SPEAKER_02

Yeah.

SPEAKER_00

Then we'll be good.

SPEAKER_02

Exactly. Now we're good.

SPEAKER_00

Have you do you feel like there are resources that you know of off the top of your head where like centers where you feel like the general public should know about that they can go to if they feel like they need help? Or are you kind of just you know, in the in the in the hospital setting 24-7?

SPEAKER_01

Gosh, I'm I'm primarily in the hospital setting, so I I feel like I don't have good knowledge of that. And I I'm you're you're highlighting that this is a a gap that I need to be more aware of. Yeah. Um, but I think that I can connect someone to the folks who who do know about those those kinds of things. Um Odessa Brown Children's Clinic, where we now work, has a new clinic that provides wraparound services to those who have experienced trauma, whether related to medical trauma or other trauma throughout their life. And one of the elements of of services provided in that clinic is related to substance use disorders. And so I know that there are many, many people I work with who have resources that we can provide to our patients. That's great.

SPEAKER_00

At least we know we're there, they're there. So that's good. That's right. They are there, guys. That's right. Yeah.

SPEAKER_02

In what way have you seen medication be used in a positive way in your practice so far? Wow.

SPEAKER_01

Well, I mean what we the way I look pathophysiologically pathophysiologically at a pain episode is that you can imagine that it's it's sort of like if we're looking at a graph of like pain over time, and this pain episode, it looks like a a mountain, and the pain is just scaling up on this mountain. And if there are no medications at home or um just the patient doesn't have access to those medications, the the mountain just keeps scaling up. Um, and then when we provide adequate pain control, what we're trying to do is is shave off the peak of that mountain. So it's much more of a plateau before it gets so high, which is why I would advocate for um intervention early if possible. And that way the pain never gets to a point where it's hard to control. It stays at this lower plateau. And then eventually that pain starts to fully subside. And then once you're on that sort of other side of the plateau, that's when it's clear that the patient can potentially go home. So, in more of the vasoecclusive episodes that that don't seem to have a component of chronic or neuropathic pain, we'd expect that they would resolve in in less than a week or so. And that is very satisfying to see that the medications that you've prescribed provided pain relief and allowed the patient to get home. And even seeing, you know, a young child who comes in and is just crying and doesn't want to do anything, doesn't even watch TV. And then by the end of the visit, they're smiling and um coloring and um you know drawing something for their parents or even for me, and and then they they're ready to go. And that that's a a really, a really great feeling. Um I've I've also seen that patients who were being admitted to the hospital very frequently and then start using one of the um the long-term medications like Suboxone, and then they stop coming into the hospital. So then, you know, maybe I'm not seeing them as much, but that's a good thing. You know, it means that they're they're able to stay out of the hospital and and live their life and um you know, get ready for for college or a job or um whatever things that they should be able to do. So um those are times where I where I do feel very satisfied with the medications that we prescribed.

SPEAKER_00

Yeah, that's great. That's great to hear. And I'm sure that's you know, in many ways, that's the highlight of your career, right? You know, being able to see your see your clients benefit from your actions and you know, feel better.

SPEAKER_02

You know, simple that just feel better. Yeah. So yeah.

SPEAKER_00

We're getting to closing, closing, closing the end of this here soon. Just got a few more questions. Have you ever felt like a time, have you have you do you remember a time where the drugs people didn't respond too well for medication that they were taking? Whether there's allergic or there's too much, or any really any any sort of reaction like that.

SPEAKER_02

And how did you treat it?

SPEAKER_01

Um well, there have been occasions where there was concern that a patient was getting too much of their opioid. We um we were seeing that their respiratory rate was going much slower than it should be, and that they weren't really uh waking up very well. And so they were given Narcan to basically antagonize the effects of the opioid. And it it worked in terms of their kind of waking up and and and no longer having issues with their breathing. Um, but the tough thing about that decision was that suddenly they're in a ton of pain. You know, suddenly they don't they don't have the pain relief that they were experiencing. So it's a it's really problematic because we got so far to the point of controlling their pain that they were having this very dangerous level of toxicity. Um, and then you know, we're fully backtracked, and then we have to kind of start over again. And suddenly that mountain of pain that I was talking about is is really high. And so it it's it's difficult to come back from that. Um, but you you do have to just sort of start over in in terms of how you're managing the pain going forward. I've seen other occasions where there was concern for there being opioid overdose, but it wasn't the case. And then they got narcan, and and then like it was a sort of an error, I would say, for the the patient to have gotten the Narcan. Um they were having drops in their oxygen saturations, which can happen for a number of reasons. And we do see uh sleep apnea as being a contributor in the hospital pretty often. That's not usually how the respiratory depression from an opioid presents. Usually it's more of an effect on your respiratory rate rather than your oxygen saturations. So that was an important lesson for the people taking care of that patient.

SPEAKER_00

Yeah, I definitely didn't know that that was a thing. So yeah, that is good to know. Um do you feel like, and this is kind of a broad question, but overall, do you feel like the system that is in place around you know, the uses of prescription medication, do you feel like the system is working well?

SPEAKER_02

Or do you feel like there is room to grow? There's always room to grow. Um, I think it's working okay.

SPEAKER_01

Um, but you know, there are a lot of things that can be very like person-dependent. So, for example, in the hospital, when a patient's admitted to the hospital and then they're going home, there's a lot of variability among providers in terms of how much they're prescribed for going home. Usually we try not to give more than a few days, at least enough to get to their next appointment so that there's clear follow-up, because we we want them to be seen in knowing that they're not fully over their pain episode. Usually it's it should be you know getting better, but but just because the patient is going home doesn't mean it's the pain is gone. It's just that it doesn't need to be managed in the hospital anymore. So we we want them to be seen again soon. And sometimes patients are prescribed a lot more medication than they really need. And that can, you know, there delay them coming to clinic to be seen. And it can also just um make people weary of you know just having more out there that's been prescribed. I think on the patient side of things, there can be also a lot of uh barriers to actually picking up the medication, depending on where they they are going to pick up their prescription. Um, so I don't know exactly how to make that better, but um it would be nice if we had uh a kind of real-time knowledge of of what's available in the pharmacy where we're trying to prescribe this medication and then what messaging we give to the patient. It's also I think a little concerning too when a patient is discharged from the hospital and they don't have their medications in hand, they're you know gonna pick up their medications on the way out. And then we kind of wonder like, did they did they get it all?

SPEAKER_02

Are they like, is it tied up appropriately? Um, those are a few issues that I can think of right now.

SPEAKER_00

Yeah. And just a quick callback to I believe it was episode two, maybe episode three of the podcast so far. We do cover uh Miss Phyllis, who works in a pharmacy in a pharmacy, and she gives her perspective on what it's like to have to have sickle cell, both have sickle cell and giving patients with sickle cell prescription medications. I think that was an interesting topic if you haven't heard it already. But yeah, no, I feel like that was a great, great response, Chris. Thank you. Um and just last question of the day, what do you feel like is one key takeaway that you want your listeners to remember today? Could be about your story or about around the new opioids or anything.

SPEAKER_01

I think the message that I'm I've been trying to convey whenever I have the opportunity to speak to a larger audience related to sickle cell is that I'm I'm here for you. And I I want you to know that I care about you and I want to be available for you. I work with a team of providers ranging from doctors and nurse practitioners to psychologists and program coordinators, program manager, nurse care manager, psychologist, neuropsychologist, physical therapists, a big team.

SPEAKER_02

Sorry. Zoom changed my axis for a second. Do you hear me now?

SPEAKER_00

Yes, I hear you now. Sorry, audience, psychical difficulties.

SPEAKER_01

All of us are very passionate about caring for patients with sickle cell. And a lot of patients in the community, I think, are concerned about how they might be treated when they come to the hospital or they come to our clinic. And I I just want you to know that you're welcome here. Um, and I believe that there are a lot of people out there who feel the same way, even who I don't know. And I think it I I encourage you to come for care if you need it, because I I worry that there are patients who are not getting care that do need it out of that fear. Um, so I'm here for you.

SPEAKER_02

I care about you, and you you're welcome in our in our care. That's a great, great.

SPEAKER_00

It's a great message to get. I feel like that's the message of really this season is that because I I feel like coming into this season, and there has been some bumps, but not really. Where it's just like we forget that we can talk to each other about what is going on, about especially the hefty subjects. You know, these are things where you have to remember that everyone here is trying to make sure that people are okay at the end of the day. And so to get to know your team and to remember that there is a team for you who is rooting for you and who is trying to make sure that you're all right, get to know them, build a relationship, and ask for help if you feel like you need it.

SPEAKER_02

Um, so yeah, no, I feel that's a great message to give. Thank you, Chris. You're welcome. Thank you for the opportunity to talk to you today. Yeah, yeah.

SPEAKER_00

Grab we can get you on. All right, everyone. Thank you for tuning in to another episode of our podcast in our blood. Please tune in next time and make sure to check the links in the description below to see or hear about any new information. All right, bye. Thank you for tuning in to another episode of our podcast in our blood. If you want to learn more about Sickle Soul, please be sure to check the links in the description below. And remember that your disability makes your ability shine so much more brighter. Peace.