VENT - Sickle Cell Crisis patients

[ChristineN, BSN, RN]

Umm I understood from class that sickle cell was a genetic disorder only affecting african americans. that being said any disease that causes sickle shaped rbcs to lodge in the millions of capillaries all over your body making your body feel like its on fire is a pretty scary thing. usually our docs prescribed heavy pain meds as well as anti anxiety meds like valium. when you treat the anxiety associated with the pain most people report less pain with less pain meds administered. keep in mind that because they have been on pain meds for many years at high dosages the use of pain meds and anti anxiety meds usually has very few ill effects.

Sickle cell does not only affect African Americans. There are many arab pts that are also sickle cell (I have take care of several). Also, I remember taking care of the palest white girl you ever saw, and she had sickle cell.

[JustMeWhoeverThatIs]

A couple of nurses have already approached this from the nursing point of view, so I'm going to try a different angle. As a nurse with sickle cell anemia, I have the unique position of understanding the realities of both scenarios.

Sickle cell primarily affects those of African descent, Hispanics of Caribbean ancestry and is found in those with Middle Eastern, Indian, Latin American, Native American and Mediterranean heritage. Most of the Sickle cell patients in America are black, but I have met those with other ethnicities as well.

Think of the worst pain you have ever had in your life...perhaps childbirth, or when you broke something. Now multiply that pain by 100. Imagine someone pouring hot lava into your veins. How does that feel like? Imagine yourself being set on fire....how does that feel like? Imagine 1,000 men drilling holes into your bones. Imagine all these things going on at once, and you are cold, while an elephant is sitting on your chest. Okay...keep that image in your mind as you read the rest.

I detest going to the emergency room or getting admitted to the hospital for my disease. I will manage it at home as much as I can, but if I need to go to the hospital, it is because the pain is uncontrollable, and nothing in my arsenal works. I do go to my doctor's visits, and have a healthy grasp of my disease process, but I still have to go to the emergency room when in an acute pain crises. Most of the time, even if I go to my doctor's office, it is just a waste of time, because he will tell me to go to the ER.

So coming to the ER because one has a chronic condition is not a misuse of the medical facility. If a diabetic came in with a blood sugar of 45 or 545, would he be misusing the ER? After all, he understands his disease process and diabetes is a chronic condition, is it not? In my esteem, SCD patient coming to the ER with an acute flare-up of a chronic condition should get the same compassionate care as a diabetic coming to the ER with an out of wack blood sugar.

Cold is not good for sickle cell, it exacerbates the painful feeling. And ERs and hospitals are kept very, very cold.

Regarding using Oxygen...even I take off the nasal cannula after a few minutes. It's blowing cold dry air, into a body that is craving heat. I'm trying to stay huddled under this one warm blanket and get warm, but cold air is being pushed into my nose. I prefer a face mask, and have asked for one several times only to be told by the ER nurse that it requires an order from the physician, and I don't need it. And as much as I know that oxygen is good for me in a crises, it really does feel like a huge slimy booger at the tip of my nose. It drives me to distraction, and there is already too much on my plate, and so, I take it off.

I know what works for me because I have been dealing with this condition for 29 years. So knowing what medications, the doses, the regimen, this is all natural, because I have been doing this pretty much all my life. I know that Morphine depresses my breathing and doesn't touch my pain, I know that Dilaudid helps a little but will make me itch like crazy, I know that Fentanyl works only for 5 minutes, I know that Demerol turns me into a delirious, blathering fool and will make me throw up. Therefore, asking for specific medication and doses given in a specific manner, should not be a bad thing, because the patient has a history that only he is aware of. You might have access to his chart from the previous hospitalization, but do you have access to his chart for every admission or ER visit that he has had all his life? It's better to collaborate with the patient and come up with a plan together, this way, you don't have to wade through the whole 'trial and error' process that does not work and just leaves your patient waiting in more pain.

By the time I get moved to the inner sanctum of the ER, and get IV line is established (I'm a very, very hard stick), I have already been in excruciating pain for no less than 2-3 hours. With no relief, the pain keeps building and building until even the paltry first 2-3 doses of pain meds will not do anything to stem the tide. So you getting frustrated after giving me 2 doses, and my pain is still a 10, well this is partly because the pain has been raging uncontrollably for so long that small doses of IV anything isn't going to touch it.

Regarding food: it's a comfort thing. When you are sick, and someone brings you your favorite drink or snack, doesn't that comfort you on some small level? So therefore, me asking for Lorna Doones (my favorite cookies), or peanut butter toast and hot chocolate is not to be rude or to turn you into my personal waitress, it's because, food brings a level of comfort into a painful existence. And not eating the food when it is brought, it is not to waste food, it is because probably right then, I am in more pain, and can't really focus on anything but the pain at that point. Or I'm nauseated. Or...hospital food tastes like crap.

Regarding your point about pain scale, right now, my pain level is a 3. When I have a mini-crises, it's a 5. When I have a major crises it's a 8. When I have pain so bad that it's all encompassing, all over my body in a tidal wave of excruciating fire...that's a 10. And the 2mg of Dilaudid shot you gave me 15 minutes ago barely took it down to a breathable 9.5. My pain score is high not because I'm a drug addict or want pain meds, it's because I'm in an acute pain crises, and at that moment, the pain is really, really, really bad. But the other nurses are right, pain is very subjective. So if the patient states their pain is a 10, treat it like it's a 10. Why does it bother you so? Are you paying for the medication or their medical bills?

A person with chronic pain might not have the same posturing that you expect with a 10/10 pain. With my 10/10 pain, I can't do anything, I don't even want to talk, I just want to cry, curl into a fetal position and pray for a quick, merciful death. However, my sister at a 10, watches TV to distract herself and keep her mind off the pain. At a 9 she can even talk on the phone. And when my parents or family call me on the phone, at a 9/10, I talk and act as 'normal' as possible because I don't want them to be worried. How one deals with pain is should not be the yardstick for the pain scale or your decision to administer or with-hold meds.

Regarding the power play issue you mentioned, there is a huge power-play between the patient and the nurse. The nurse feels like she knows everything and can pretty much decide how miserable she will let her patient be, while the SCD patient who has been dealing with this condition all her life is thrust in the role of the supplicant, begging for water, help to get to the bathroom, pain meds etc..

You also have to bear in mind that many SCD patients have had negative and bad experiences with medical professionals pretty much all their lives. Having experienced painful crises and several hospitalizations, I can tell firsthand the negative attitude that health-care practitioners exhibit towards sickle cell patients. It is common for SCD patients to be labeled as malingerers, manipulators, or even defined as drug seekers by nurses and physicians. So the patient is coming to you with BAGGAGE from all these previous hospitalizations. And you have BAGGAGE from all the hordes of frequent flyers you have taken care of. It's like a toxic relationship, no trust, but tons of baggage on both sides.

SCD patients frequently report dissatisfaction with care they receive, which is often related to inadequate pain relief (Dorsey & Murdaugh, p. 45). Inadequate pain relief results in a poor quality of life, passivity and aggressiveness when dealing with care providers and heightened distrust between SCD patients and their providers (Strickland et al., p. 37).

I have had a nurse tell me, "Don't expect all your pain to go away." I have been discharged in pain and had to crawl through the ER to the waiting room on my hands and knees, while nurses looked on. I have had to wait for hours for someone to help me to the bathroom, and it was the woman who came to mop the floor of my room, that walked me to the bathroom. I have had a doctor tell me "shut up, you don't know anything." I have had a nurse say to me, "Why are you crying, you should be used to this by now." These are just my stories...and I am a nurse myself, and have been exclusively only to the ERs of the Hospitals where I have worked in. So I imagine that your patients are coming to you with the same history---or worse.

So I come to you, with all this baggage, in pain, and I'm asking you to help me.

What you do, well....that's all on you, but realize that as a nurse, you are supposed to help people...and not harm them.

Thank you so much for this post. My only brother has SCA and is nearly nineteen years old. I've watched him his entire life suffer through unbearable pain crises, knowing that he has more strength than I will ever possess. One of his first words was "easy," which he used to encourage those around him to handle his little body gently because he was in so much pain. Many years later my brother is a full-time college student. Last week, his spring break, he went into a really bad crises. He went to the ER only to be sent home a few hours later. The next day he was back and was pretty much refused care. (There are more shocking details to the story, but I don't want to make this too long.) He ended up going to a different hospital system where he ended up having to be admitted and given three units of blood. (This was only like the third time he's had to get blood in his entire life.) My brother is 18, 6'2", and HANDSOME! :) Do you think he wanted to spend his spring break lying in the hospital bed, getting poked with needles while his friends were at the beach? Do you think it was fair that he had to spend nearly the whole week trying to get someone to give him adequate care? Do you think it was fair that he was turned away because being a BLACK MAN who needed MEDICATION, he was LABELED as someone who just wanted DRUGS??? I would love to believe all the people here saying that there is no racial basis to their biases. If that was your little brother or sister in that bed, your son or your daughter, would you be saying the same thing? If you watched someone you love and admire in unbearable pain, screaming out in agony, tears running down their face, would you say they are lying and fishing for drugs? I am disgusted by some of the things these nurses have said and the way that these patients are sometimes treated. We really need to do some reevaluation of why we chose nursing and what our role as health care providers should be.

[muchmedic]

This is a well needed vent. This is not to be taken out of context. I am simply trying to make a point. Although Sickle Cell Crisis (SCC) patients are mostly black, this is NOT a racial issue.

Here goes.

In my years working the bedside, I have cared for many a number of SCC patients. In those years I have noticed a common theme or behavioral profile so to speak of these patients. Most of these patients have had repeated hospitalizations from early childhood and become "institutionalized" in some ways when it comes time for re-admission to the facility. What is irritating to me as a professional, is the constant use and misuse of our medical facilities. I understand the remifications of this dreaded disease; However, if a patient so well versed in healthcare like SCC patients (and so many are), why the disregard and lack of involvement in there care?

Of the numerous SCC patients I have cared for in my career, I can only think of 2 that have participated actively in there care. Most of these patients are ordered O2 - Invariably when i do my rounds they have it off or simply refuse to wear the cannula. Many of these patients order vast amounts of food from dietary services, and yet, barely touch any of it - what a waste of food and hospital monies.

Perhaps the most pressing issue is Pain Management. Almost always, the pain level from these patients is 10/10. I am not doubting the existance of their pain, but after seeing first hand palliative care cancer patients in AGONY, I must say that i am skeptical that SCC patients' pain level is 10/10 all the time- everytime.

Maybe I am narrow minded and a bit to harsh on these poor individuals, But from what I have seen in my years working the bedside with SCC patients, MOST of the time - there seems to be a bit of manipulation and a power-play. Sadly, I think it is the patient with SCC who takes the chance and will lose.

This was a vent and Like I said in the begining, This is not a racial issue. I needed to vent this. Please dont come to the conclusion that I am oversteping my boundries or making unrealistic statements.

I would like to reply to your post, VENT. First of all you for you to say more than twice that your statement was not racially motovated, just shows how much it is to you. If you take a minute to listen to yourself you may get it! These patients are back and forth in and out of the hospital, the first thing that they want is something that you cant see or feel, that is pain management! After that is taken care of they are fine. the pulse Ox. usually say 100%. However I never heard you say anything about the patient that the disease takes over the ones that are on a non rebreather and near death at a young age. Are they taking their O2 off,are they ordering food, I dont think so. Nurses and Docs that dont treat these patients as being part of a disease process need to check their actions not the patients....they are patients, dont catorgorize them and you wont be...Dont be part of the problem be part of the solution.

[NRSKarenRN, BSN, RN]

I've cared for 100's patients with SCA throughtout my carreer

Please remember that in Sickle Cell Disease, acute crises involves vaso-occlusive pain episodes often with tissue ischemia occuring.

Please read and incorporate into your practices info posted here:

https://allnurses.com/general-nursing-discussion/sickle-cell-crisis-464696-page2.html#post4200969

[Guest219794]

not all SC patients are "Black" though i would think most if not all are African (descent).....

I'm pretty sure all humans are of African descent.

[diane227, LPN, RN]

I have taken care of a lot of patients with SS and a few were frequent flyers but for the most part they only came in when they needed to. I was in a large inner city ED with a large black population and so we had a lot of patients. We saw SS pts every day. Many of these patients did not have the resources to get ongoing care. Some could not get into a clinic visit for months. Part was our fault because we could not provide the service. It is a bad disease. I am not there to judge them. I am there to treat them. As the best ED physician in the world said to me once, every patient who comes in here is "drug seeking". They are all seeking some type of drug to make them better.

[cherrybreeze, ADN, RN]

I have virtually no experience with Sickle Cell patients...if they come in, they wouldn't come to my floor, and I live in an area that was predominantly white (of course, that changes more and more every day, and I am ok with that....but it wasn't too long ago that any African American man around here was assumed to be a Packer player, by some of the less intelligent ). Anyway. Last week we had a patient come to our floor (they were ruling out a gallbladder problem) who insisted, as did his girlfriend, that he was in a Sickle Cell crisis. Labwork directly contradicted this, but he would not be swayed from his opinion. Crying, carrying on, respirations literally 80 per minute, as he was hyperventilating due to his .... pain? ... and nothing would calm him down. Being told by a couple of different physicians that he was indeed not in a crisis did nothing to change his mind. (I guess I am also wondering, can this be determined by labwork? I do not remember what they did, but they repeated the tests a couple of times, all with a negative result for indicating SCC) His drug screen came back positive, and it was thought that *maybe* he did a drug that was laced with something wicked, as they could not find a reason that he was having the symptoms that he was. That's been my only experience, really, with SC patients.

Chronic pain, however, is another matter....I've dealt with it for over a dozen years, and have felt the judgements by healthcare personnel! I was diagnosed with endometriosis as a teenager, and with interstitial cystitis a few years ago. The only times I would go to the ER was when the pain got to the point that I couldn't manage it on my own. Since neither endo or IC show up on things like ultrasounds or CT scans, you can imagine the reception I got when they would do these tests and they came back looking fine. I was instantly a drug seeker, in their minds. Right before my IC diagnosis, I was in the ER two evenings in a row....I knew the pain I was having was not the usual, but again, no tests that they could do revealed anything, and the ER doc got nasty real quick (I read her dictation later, and was baffled...and MAD...by her interpretation of my visits ). Now that I am in pain management, I don't have episodes that land me in the ER (thank goodness!) but it was always a battle. Before my pain became a daily problem (the IC made it an everyday thing), my GYN was more than happy to write a script for a small amount of Percocet to get me through the worst of the month (we're talking like, 12 pills). I had first gotten meds for my cramps when I was like, 16, so I've been doing this/dealing with this for a LONG time. If it was his day off or he was on vacation when I called....no dice. His partners were not willing to do what he would have done, in his absence. I got more than one *lecture* about the overuse and abuse of pain meds. Even having access to my chart, and being able to see what he did on a regular basis to manage it, would not convince them to act on his behalf. His hands were tied, he would always apologize for their responses to me, but he couldn't MAKE them do anything. After my IC diagnosis, he referred me to pain management, since he wasn't comfortable prescribing regularly over the long term, which I completely understood. I still, to this day, appreciate his willingness to treat me over the years, and to take my complaints of pain seriously. Not enough docs do that.

As far as the IC goes, I've taken care of a few patients with it over the years, too, and my colleagues get very frustrated when these patients complain of pain all the time. They'll have procedures done, that don't really help, so of course, my coworkers think they're "seekers" too. I will take these patients when I can, because I know what they're going through. Even if I can't make their pain go away, they appreciate knowing that someone understands (I don't usually share details of my personal life with patients, but in one of the cases of the IC patients, I told her that I also suffer from it....she was grateful to have someone taking care of her that FINALLY knew what it was like). I've read in several sources that IC pain is comparable to cancer pain. The OP compared taking care of SCC patients to taking care of patients in "real" pain, like cancer patients, so I just wanted to point that out...that sometimes, pain from other sources or reasons CAN be as bad as that. For me, most days my pain is managable, but if I have a flare....yes, it's bad. I'll never call my pain a 10, though, because the way I look at it is, it can ALWAYS, somehow, be worse. But, when I AM in bad pain, I may not look like it. That ER doc I mentioned pointed out, in her dictation, that I was talking to a friend (my good friend works in medical records, she came down to talk to me while I was there). It was a nice distraction away from how I was feeling, the doc took it to mean I was "faking." In assessing me, they asked what I usually take for pain when it got bad. I told them Percocet is what my GYN usually would give me, when things got bad. They brought me a dose, and her dictation read "Patient asked for Percocet." NO, I did not! I was fuming. They asked what usually helped and what I usually took, and I told them, I did not say "Can I have some Percocet?" It might not sound like much of a difference, but there is one. My VS sometimes reflect pain, sometimes they don't, I don't usually writhe or groan or cry. I've been dealing with it too long to react like that anymore, I'm actually pretty stoic. That doesn't mean I don't hurt, and hurt badly. After a lot of years, though, your responses adapt to it.

Sorry to ramble, especially since a lot of it wasn't quite on topic, but it's just another view of chronic pain.

[psalm, RN]

Cherrybreeze, I sometimes feel like I should have a tee-shirt that says "I Survived Endometriosis". From the time I was 14 til my hysterectomy at 31, my "cramps" and subsequent pain every day of the month were debilitating.

[cherrybreeze, ADN, RN]

Cherrybreeze, I sometimes feel like I should have a tee-shirt that says "I Survived Endometriosis". From the time I was 14 til my hysterectomy at 31, my "cramps" and subsequent pain every day of the month were debilitating.

Did your hyster help you?

I've discussed it with my doc, but since I don't have kids (not sure if I ever will), I don't want to go that route yet (and since my endo all grows on the outside of it, I don't think it would help?). I've had 3 surgeries for it...the first two, it grew back within months. The third was with a renowned specialist who uses a different technique, but still, my symptoms returned.

With the IC, for me, it felt like I had the cramps that I get with my periods, every single day. Some people with IC just have voiding symptoms, some have pelvic pain, some have both. I have mostly the pain, and sometimes the voiding symptoms, when I have a flare (feel like you have a wicked UTI, all the time). Before pain management, I missed a LOT of work. Had to set up intermittent FMLA or I would have lost my job.

psalm, I am sure you hear the same thing from people that I hear (ex boyfriends included): "Everybody gets cramps, how bad can it be?" (I'll tie your &%#$ in a knot, then you can ask me again.....). I hope you are doing better now!

I imagine some SCC patients deal with the same stigmas/issues. Could some of them be seeking? Of course. Same with any other painful condition; I know of a gal who's had a hyster for GYN issues, and has since gone on to have pain from several other sources (knee pain, then something else, etc...always something new, when the current one was fixed). This is a friend of my sister. My sister has a hard time talking to her; every conversation revolves around what hurts, what meds she's on, how many times she's had to "switch docs" to get one that would prescribe her meds (I know patients truly in pain can have the same issues, but it's different with this gal....hard to explain any further). You just can't paint all chronic pain patients with the same brush, regardless of what the cause of that pain is.

ETA: sorry for getting a bit O/T!

[leslie :-D]

With the IC, for me, it felt like I had the cramps that I get with my periods, every single day. Some people with IC just have voiding symptoms, some have pelvic pain, some have both. I have mostly the pain, and sometimes the voiding symptoms, when I have a flare (feel like you have a wicked UTI, all the time). Before pain management, I missed a LOT of work. Had to set up intermittent FMLA or I would have lost my job.

cb, wouldn't a cystoscopy detect the inflammation of ic?

leslie

[cherrybreeze, ADN, RN]

cb, wouldn't a cystoscopy detect the inflammation of ic?

leslie

Not just a cystoscopy necessarily, but it's diagnosed with a cystoscopy and hydrodistention. The appearance via scope MAY look normal, but after the distention is done and they look again, IC will show focal hemmorhages and petechaie. They are done under general anesthesia, because it's painful. It wasn't something they did, or would have done, in the ER. In fact, after those two visits, my GYN referred me to a uro, who did one and diagnosed it. At the time, I didn't have voiding symptoms, just pain; all they did was a UA, which shows up normal usually in IC patients (it may sometimes show blood, but not always).

[psalm, RN]

I feel for my SCC patients, because the pain is real. Some self-medicate and then come in with what they call a crisis but all the tests are wnl...so the docs have to decide if the pain (which is real) is from something else...psychological, etc. But yeah, some of the behaviors of sickle cell patients can be very trying. I try to remember my ordeal with endo to have compassion for them.

My horrible back pain and cramping and aches left. I was on danocrine for 9 months before my surgery and the danocrine helped about 3-4 months but the side effects were awful. Still, it may help you with less s/e than I had. PM me if you want...don't want to hijack the thread.