Tuesday, June 17, 2008

The Sickle Cell Drug Addicts

I'm a nurse in a NYC public hospital and we have a cohort of patients w/SC who I see in the ED at least everyday or every other day. The hospital has a SC clinic but when it closes the patients come to the ED. They don't have to wait and everyone knows them. So for the next 6-8hrs they are given high doses of Dilaudid/Benadryl (at least three rounds) and are released. Okay, the question - are they addicts? I mean I KNOW SC is a horrible disease and reading your blog only drives that home for me. But honestly as a nurse my compassion is waning. The patients wait at the desk 2-3hrs on the dot after the last dose saying they need the next. Seeing them on a daily recurring basis only decreases my compassion as well. I really would like to get your take.

No, they aren't addicts. Think of the worst pain you have ever had in your life. It could be a broken limb, labor, migraine or even the shock like twinge you get once a while when you turn your head the wrong way. Okay now multiply that pain by 1000. And imagine that it's unrelenting, constant and totally all consuming. Picture that pain not only in the affected limb but all over your body. Imagine the pain immersing every single one of your body cells, coating them like fire while a million men are drilling into your bones. You can actually feel every single cell in your body screaming in pain, you can feel with every breath the pain gets worse and worse and worse and worse.

That was just a short snapshot of what a pain crises feels like, in fact, that was just a mini-compilation in words. In actuality it's so much worse. You've been on all kinds of pain meds all your life, in fact one might say you've built a tolerance to them. See tolerance is not the same as addiction. Addiction occurs when you crave the medication but you don't have any pain at all, Tolerance occurs when you've been on pain meds for a while and your body is accustomed to the dose, so now, a dose that you consider 'high' is actually barely scraping a few shards off the pain.

At the most, the Benadryl zonks you out enough that you can ignore the pain, but it's still there like a beastly monster, waiting for an hour or so just to pounce and devour you in waves of agony all over again. Your tolerance is to the level that the Dilaudid dose just helps to take the edge off, the edge that would otherwise have you screaming and rolling on the floor in hysteric misery.

Unfortunately for you, your prescription ran out, or you don't have a high enough dose to cover the immense pain that you are feeling. The clinic is closed. You were just in the ER yesterday, but got discharged still in pain. You don't want to go back to the hospital, but you have to, because right now at this very moment, you feel like if you don't get some help, you are going to die. It's a fine line between wanting to live and wanting to die, and that's the determination that makes you go to the hospital.

The nurses and doctors remember you from the day before. The doctor tells you that you were just here yesterday and should see your primary care physician. The nurse tells you to stop messing around, she's busy and doesn't have time to deal with fakers or addicts. You try to carry on a brave front, but inside you are a roiling mass of despair. The pain doesn't even let you focus, it doesn't let you express what you really want to say. All you can do is grip your sides and pray to God for mercy.

You watch the clock, still hurting but too proud to ask for more meds. The dose the harried nurse gave you was small and didn't do much. You smile and say thank you, gritting your teeth and sweating profusely in the effort to remain civil even though this fiendish torment is owning you, claiming you, torturing you. The hands on the clock creep slowly onward until finally you realize it's almost time for another dose. Perhaps this time you will find relief from the anguishing waves of pain. Perhaps.

Alas, your wishes are in vain as this dose barely does anything more than the last did. You know you should ask for more pain meds, but the look the nurse gave you when she injected the so called 'large' dose was enough to keep you quiet. You don't want to risk rejection and apathy from the people that are supposed to show compassion to you. So you go inward, into your happy place and become zombie like, trying to float outside of your body so that the pain doesn't get you. The nurse thinks you are sleeping, and tells another, "she's just drug seeking". Those words reached you and caused your heart to break some more. Now it's not just about the physical pain, but the emotional abuse you've gotten from the hands of the 'helpful' has just made you realize how bleak your situation is. No one understands.

Finally after the last dose, the nurse and doctor concur that you are well enough to be discharged. Your pain is still there, the underlying problems aren't solved, in fact they weren't even addressed. You are about to be discharged because you got the requisite three doses of Benadryl/Dilaudid and the ER 'can't do more to help.' Because everyone knows that three doses is enough to fix you. It's enough to fix sickle cell pain and let you go home. Besides, they need the bed for sicker patients. You protest, faintly at first, then louder, "But I'm still in pain! I'm still hurting!" Your pleas fall on deaf ears and icy demeanors. You are practically shoved out the door, paperwork appearing instantly, your IV taken out and the CNA unceremoniously comes to the room and tells you she needs to clean the bed.

The pain is still intense, you can barely walk---in fact, you find yourself falling as your knees buckle down. Your hands reach forward and prevent you from landing on the floor. Your joints protest as you use them, the cold hitting you and making everything a thousand times worse. You drag yourself by sheer force of will outside, forcing yourself to just keep breathing, keep living, keep fighting. Go Vixen, go! Just take another step, just crawl one more inch.

Tomorrow is another day. Perhaps tomorrow you will find some relief from this all consuming, all encompassing agony. Perhaps tomorrow someone will throw the rule book away and treat each patient on an individual basis. Perhaps tomorrow the doctor at the clinic will give you a higher dose for your oral pain meds. Perhaps tomorrow you will come across someone that actually understands, or at the very least, has some fuckin' compassion.

But today, all you have is you. You and your pain.


Anonymous said...

To the nurse in a NYC public hospital.What if it was your 10 year old child? Would they still be an addict? My mother had to see me go thru this when I was a child.....back in the 1950"s.Imagine that.Then this is what I want you to do."thou shalt not whine"

LIFE IS GOOD said...

That nurse scares me. I hope to God she never has to endure that kind of pain and be told that she is "faking".

Anonymous said...

Thank you Vixen for your response. Let me first say that I'm not rude to ANY of my patients or treat them badly. I strive to treat every patient as if it were my mom/dad/sister, etc. That's why I became a nurse. As a new nurse (1 year ago this month) I understand medically/clincally what SC Disease entails. However, honestly, I'm surrounded by other nurses/docs who do bitch/moan about the "sicklers" as these patients are rudely called. I found myself falling into the trap of rolling my eyes when I'd see a SC patient. Something in me said -- seek out info. I didn't feel comfortable really talking to a patient about it - I think that would be inappropriate. That's why I went on the web to find out more about SC. I came across your blog 2months ago. It has enlighted me. I understand "clinically" what tolerance and addiction mean. However I asked one of the docs and he said -- "they're addicted. That's why we give them 3 rounds, etc." So I got up the courage to ask you on your blog and to be honest about my feelings. If I have offended you or anyone I truly apologize as it wasn't my intent. Thank you.

Vixen said...

Anonymous Nurse, Congratulations on your first year of nursing. I know personally that was the hardest year for me being a nurse, starting from a place of ignorance and ivory tower nursing to putting everything I've learned technically to real use. We're not accusing you of being rude, it's just that we've been through so many instances like this, so this is something that strikes home to us. The post I wrote up, that was an instance that actually happened to me, it wasn't fictional at all. This is what people with sickle cell go through on a regular basis.

I think it's courageous for your patients that get emotionally beat down by the system and yet keep coming back each day hoping for some help.

I think as a nurse you should be a PATIENT ADVOCATE, and not fall into the uncaring rap that everyone else does. You can't plead ignorance anymore. The pain---it's intense! The drugs, don't do shit. That's it, cut and dried. The so called "high doses", aren't enough to cover the pain. You should assess your patients on an individual basis and stand up for them. They don't have anyone that can stand up for them with the doctors EXCEPT YOU.

So please, take what you've learned and hopefully apply it to your practice. If all I did was peel aside the third wall and let you see into the mind of the patient, then I've done my duty. I'm a nurse as well, and I know that sometimes it's hard to show compassion to some patients. But sickle cell warriors shouldn't fall into that category, no matter how many times they come to you in pain. The pain is a total bitch, and it's not something I would ever wish on my worst enemy. Thank God when you get home everyday that it's not something you have to deal with on a regular basis.

It's not inappropriate to talk to your patients. I love it when the nurses talk to me, but the condescending tone that you had in that first comment---that shit is not going to work. Please don't approach them like that. Instead, ask open ended questions assessing the pain, and seek out their story and their coping strategies. Every patient is different----so you have to treat each person differently. Hey, for conversation starters, you can start with talking about this blog:)

If all you can do at the end of the day is empathize with them and give them a genuine hug, maybe that might be enough to pour some succor on those emotional wounds. Maybe.

Anonymous said...

I'm not the nurse, but the parent of a 16 year old with SC disease. I think it's important that we don't dismiss the facts that the narc's that are given to SC patients are ADDICTIVE by nature. this is the truth.
So while yes some SC patients deal with excruciating pain, I think I'd think twice if I were seeing the same people on a daily basis. I've seen some of my daughters peers who've missed entire school years because they were in the hospital consistently. To my knowledge if you're living with SC you're living with some degree of pain every day or most days. But even in the most severe cases I'm not sure I accept the fact one should need narc's everyday.
I had to hide percoset and vocodine from my daughter because she would take these meds frivolously when she was having like L2's ..
She started calling the doctors acting like she was ME and asking them to refill vicoden for her..
when i tried to lock the meds up she broke the lock off the safe. I was at the end of my rope.
They started her on the chronic transfusion program.
I still hide the narc's though. I don't know what she'd do if she knew i had them.
Other parents have complained to me as well that their kids are showing this same behavior. It's really preventing these kids from completing school.
I won't say or not say if it's addiction. But it would look like addictive behavior to the average person.
It's VERY difficult to call, but I don't think we do anyone a service by making it seem like SC patients CAN'T or DON'T get addicted

Shug Avery

Vixen said...

Anonymous Dad, I can understand your perspective. But as a nurse myself, I would rather err on the side of giving patients pain medicine who are in pain, than with-holding pain meds from patients who are in pain, because I think they are addicted. Whether or not they are addicted, that is not my concern, and not my call to make---pain management, is the fifth vital sign for a reason.

FYI Most sickle cell people are AFRAID of getting addicted. They stay in pain with no meds for hours and days, I've done this myself. Even when they do get pain meds, they take meagar doses because of that fear.

I'm not saying that there isn't the potential for addiction, I'm just saying that 9 times out of 10, the kind of patients she described in the ER are truly genuinely in pain. I do believe that if there is someone that is addicted, they can ruin the rep for everyone else, but at the same time, it's not fair to punish everyone that has sickle cell just because there are a few people hooked on the drugs. It's better to be emphatetic across the board, it's better to show compassion across the board.

You don't know the high levels of pain that we deal with, and aren't in the place to judge that. Parent, nurse, doctor, friend...unless you have sickle cell yourself, trust me you have no idea. So if your patient is telling you that they are in pain, just believe them and do your part to alleviate their distress.

cynthia said...

TO THE PARENT OF THE TEENAGER:I have to agree with Vixen.I have sickle cell disease as well and I also have beta thalassemia major.I have been given oxycotin,vicodin,and any other strong narcotic with the exception of demoral.And the only time I get that drug is when I am in the hospital.Do you know how many times I forego the drugs to keep myself from becoming addicted? And do you know how much more painful it is for a child or teenager? Some of us grown folks can manage the pain in our minds so we don't take the drugs as much.But a child or a teenager/young adult don't stand a chance.Imma try and put this pain in your mind so you can see from where we come.Think of a grizzly bear or a panther....attacking you with their claws and all at the same time you have fallen from a roof of a house....and fractured your legs and arms in four places? Can you feel that? That is how it feels on one occasion,it might hurt threes times as worse the next time.So if you have not gone thru this pain yourself,your child has.Imagine that.The good thing about the beta thalassemia,I may have three-six crisis a year because that disease protects me in a way.I could not imagine or handle the numbers being higher.But if it is just scd,the crisis numbers are much higher and each crisis gets more severe.This is what your child is going thru.Then she has to have people around her telling her that the pain doesn't require the amount of meds that she so desperately need.Or treat her like she is an addict.Think about that.

Anonymous said...

In your response to Anonymous Parent -- you state that "I'm not saying that there isn't the potential for addiction" and "I do believe that if there is someone that is addicted, they can ruin the rep for everyone else, but at the same time, it's not fair to punish everyone that has sickle cell just because there are a few people hooked on the drugs"
So the possibility exists a SC patient, even just one of these patients seen on an daily basis could be addicted? Yes? The message I got from your response is that they weren't addicted AT ALL and that addiction WASN'T even a possibility. That's incorrect then. Addiction is possible. I'm not trying to be a bitch but I felt thrown under the bus because I asked a question about addiction. I understand the sensitivity to the issue. You all suffer with it - I don't. But narcs are narcs -- thus addiction is possible. Don't get me wrong -I get it -- 99.9% of the patients that come into the ER are more than likely NOT addicted. I also get from your response and reading the comments -- 99.9% of those whose suffer from SC AREN'T and DON'T get addicted -- BUT a possibility is that one could become addicted. That's all I was asking. I TOTALLY AGREE with your statement "It's better to be emphatetic across the board, it's better to show compassion across the board" and I do and will continue to do so.

Anonymous said...

i have recently left hospital after a near death sickle cell crisis, in which the facts as stated by the patient with a similar disorder jointly experienced. The pain is so excruitiating that the compassion which we emboldened our carers with is sorely missed out of ignorance for the individual and the severity of the illnes.

*Just my Luck* said...

My mother who is also a RN has told me over numerous occasions not to accept dilaudid as pain medication and to ask for something different such as morphine because of all the addictions caused by dilaudid but I don't. I'll be 21 in two months and have dealt with sickle cell pain my entire life and i'll be the first to say that as afraid as i am to become an addict dealing with the severe pain caused by sickle cell is nearly impossible and I can't do it on my own. I do need the empathy of doctors and nurses to control my pain. Unfortunately i have dealt with doctors and nurses who thought i was faking being in crisis and just threw me in an er room and gave me dilaudid then sent me home two hours later. I know it maybe hard to tell who is addicted and who isnt just think how you would feel if you sent someone away who was indeed in severe pain...and dont always rely on how the person is acting. I show no emotions at all to doctors or nurses, which is probably why they think im faking...

Ify said...

All I can say is to treat all patients equally. I had a near death experience where I was refused treatment (not even an IV fluid), kicked out of the hospital and referred to as a drug addict when I was having the L4s. Well long story short, I had continous blood transfusion up to 5 bags in a different hospital and I spent almost a month at the hospital.
After this experience, I learnt that some people are not qualified to work as nurses or even doctors if they can kick a patient close to death out of the hospital.

Please when SCD patients are in pain crisis, they are in pains because no amount of pain medication can stop the pain or make them get high on the medication. Some of us SCD patients don't show emotions (like crying their eyes off their heads) when in crisis.

SCsickler said...

Adding to this convo late:
All I will say is "Just my luck" hit it right on the head for me. I really do try not to get dilaudid as much so I do not become addicted to it. So to all those who say those of us with SCD are and will forever be addicts, I say you can kiss my a**.

Sickle Cell "SC" since 1985