Can Sickle Cell Disease Warriors Lower Risk of Pain Crises?
Dr. Marwan Shaikh and hematology nurse practitioner Maya Bloomberg share situations that have triggered pain crisis for patients and their advice for reducing pain crisis risk.
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In this program:
Sickle cell disease warriors can take steps to lower their risk of pain crisis. Dr. Marwan Shaikh and hematology nurse practitioner Maya Bloomberg share situations that have triggered pain crisis for patients and their advice for reducing pain crisis risk.
Transcript
Ariqa Everett:
Dr. Shaikh, I wanted to get your opinion on the pain crises as well. Are there ways that patients with sickle cell disease can lower the risk of having a pain crisis?
Dr. Marwan Shaikh:
So there are a number of ways, and I think first is just identifying what are the triggers for your pain itself, that as a starting point, and then knowing, “Okay, if I'm having this pain right now, and what are the things I need to do immediately? And what are the things, what are my reasons to...okay, I need to go seek further attention.” So I think for you to mention a number of different things, and literally any organ system can be involved, but number one is just educating yourself on understanding what is going on, what's causing it, and what can I do about it. So initially, we think about is fluid fluid fluid, the cells in sickle cell get dehydrated and so they change shape. And when they change shape, it almost looks like a crescent moon. And when they get the crescent moon shape, they can't deform and get through the tiny blood vessels, so they clog them up. So all of these complications ourselves that are being pulled up, so you need them to re-hydrate themselves. So you need to get them flowing and get them back into a normal shape. So hydration is the number one key, and then there's, of course, pain control, and this stuff hurts. And you see people arriving in pain in the hospital sometimes, and you just feel awful, because you feel like you can't do anything except doing the treatments with IV fluids and pain medication and then waiting it out.
And so I think knowing what those triggers are, knowing how to try to prevent and try to slow it down with fluids, pain control, and then knowing when to go to the hospital. And from that standpoint, once you get to the hospital, then we can help take over from a provider standpoint. The biggest reason that I feel like patients lose control of their disease is that they're not being compliant with medicine, or they're not taking it, and that's easy to do. It's not because they're actually not trying to take it sometimes, but they forget to take it, and hydroxyurea (Hydrea), which has been around the longest, is a very excellent drug, which is relatively cheap compared to the newer agents. And so compliance of the medicine, following the doctor's recommendations, having a good rapport with the physicians and with your family in the story are telling us is remarkable, because you were able to take your son from potential anxiety, depression down a very dark pathway and turn it around really quickly, so having that spend with many support in communication is very key. Yes, all these new therapies are going to be great, but if we need to treat someone right up front and make a big difference immediately, we have options, and it's just a matter of you getting access to the treatment.
Maya Bloomberg, APRN:
If I can piggy-back just, I don't want to assume that people who are listening are going to understand what all of the triggers are. So obviously dehydration is the number one trigger, and infection is a really big trigger. So in light of COVID, it's so important for our patients to get vaccinated, the flu vaccine, pneumonia vaccine, COVID vaccine, especially in the lieu of COVID we see sickle cell patients are at higher risk for acute chest syndromes, hospitalizations, there's a racial disparity in general when we just look at people of color versus Caucasians for complications and deaths related to COVID. So infection is a really big trigger for sickle cell crises, so maybe you're having a urinary tract infection. Dehydration is a big one. Stress, so this could be physical stress, maybe just overdoing it at the gym, or it could be emotional stress. I've had patients just go through really bad breakups and that is...which triggers a whole cascade of different types of crises. So you definitely need to identify your trigger. Because if you don't remove that trigger, you're just adding more insults. So it's a matter of just resting and balancing activity and rest, maybe seeking support from your family or professional if you really are super stressed, drinking lots of fluids. So hydration, obviously is key and an integral part of sickle cell, but another big one for females are your period. So if you're having a crisis every single month that's triggered by your period, we can refer you to a GYN to consider IUD or other methods to help control those pain episodes. So, we have a nice medications, hydroxyurea (Hydrea). It's really the only medicine you can say is going to make you live longer with sickle cell. We've had decades and decades of research and data on it, which is why we're starting babies on at such a young age like Dr. Shaikh had mentioned. But you can't take medication, you can't out eat a bad lifestyle, you need to have mind, body, and soul all together and in unison in order to really manage your sickle cell. So no matter how much hydroxyurea you take, if you take it every single day, if you're not having the lifestyle habits that are getting good quality sleep and stress management, not smoking, limiting alcohol, things of that nature, you're still going to have crises, so you’ve got to look at it all.
Dr. Marwan Shaikh:
Yeah, one thing that people sometimes forget is, you know just heat in general, you know you live in sunny Florida, and it's awesome weather, Arizona is super hot. I mean anywhere can get hot. So patients who come from the northern areas, especially during wintertime, and then they come down to Florida for vacation, they have to be very careful, because they're not used to the change. And another thing that was brought up in a study from 2019 was missing appointments, and they found that missing one appointment, doctors’ appointments was leading to increased rates of hospitalizations and readmissions. And so then when they did a survey, they're looking for...okay, what are those reasons? I forgot, I didn't have transportation, I didn't know I had the appointment, or it just wasn't a convenient time. So all of those things are very preventable and easier, easy for a center to say, make a phone call to the patient before the clinic, make sure they can get there, make sure that they know about the appointment. And from a patient standpoint, all we need to do is find a mechanism to help remember the appointments if it doesn't work, find another time it does work. And so all...any things are very simple things that can make a big difference.
Maya Bloomberg, APRN:
And most insurances, they have case management as part of your plan, so you can actually have a case manager help you remember your appointments and remember refills, and also how coordinate transportation, so you don't miss the appointment. So it's just an example where education and being aware of what resources are available can help you be more successful in managing your care.
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