Sickle Cell Warriors

Articles

 Breaking News

Nurse Vent on Sickle Cell Patients

This is a vent that was taken off a well known nurses board about sickle cell patients. The nurse is complaining to other nurses about sickle cell patients. Please be advised that this might piss you off…very, very much. This is a prime example of the attitudes we are dealing with EVERY single time we go to the hospital. EVERY SINGLE TIME.

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 ramifications 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 existence 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 beginning, This is not a racial issue. I needed to vent this. Please don’t come to the conclusion that I am overstepping my boundaries or making unrealistic statements.

So other nurses chime in, and pretty much agree with the original poster. A few nurses attempt to chide him but it wasn’t until a few days later, that he got properly schooled, Warrior style. It really took alot for me to hold back and instead of eviscerating him, I educated him.

My Response

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.

Related posts:

Tags
Share

About Author

Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin’s message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

Related Articles

39 Comments

  1. Diva33
    Diva33 July 09, 16:16

    THANK YOU! THANK YOU! THANK YOU! If even one nurse reads your reply and changes the way they treat SCD patients, we have won! THANK YOU for telling our story!

  2. Bridget Reynolds
    Bridget Reynolds July 09, 17:48

    Well, I suppose I am one of whom she speaks. I could not eat when I was in the hospital, tried though I did. Waste of food? I could eat before going to the ICU. After the ICU anything I put in my mouth made me want to puke.

    The doctors and nurses were concerned and so was I. Food from home helped some. I could only eat things that had vinegar in them (pickled beats, three bean salad, hummus, cold broccoli salad). Must be the medicine. This nurse should explore cause and effect instead of trying to castigate those in need. What ever happened to the scientific method?

    Ischemic pain is usually a 10 and should actually have its own scale. It’s off the charts. Compared to other types of pain it is a 20.

    I wore my oxygen. I needed it. I asked for it. I take responsibility for my health always have. If I am not compliant, it is for a very very good reason. I also requested an incentive spirometer.

    I am glad the nurses who took care of me are not like her. I sent out thank you cards because many of them deserved it.

    I ran into a physician like this nurse. He actually blamed me for getting pneumonia (before another staff member who was a witness to his inappropriate statement.) Supposedly, I would not get up an walk during my severe pain crisis. (While I was under the influence of morphine and a fall risk, drugged to cloud nine.)
    No nurse asked me to walk and besides such an order would be initiated by physical therapy once the patient is able.

    When physical therapy arrived I got up and walked. There are some people who are in the medical profession for the wrong reasons and have personality disorders. The hospital apologized to me for this doctors weird inappropriate statement.

    Regarding the drug thing one often hears (are we addicts?) I have never run into so many people using Dilaudid for pain that is not comparable to what sickle cell patients experience or that is not that severe. None of them had sickle cell anemia and no one questioned the need for such a strong drug. I have never used Dilaudid.

  3. Bridgett
    Bridgett July 10, 14:52

    GYRL, you hit it right on the head!!! I don’t even need to add anything else. Thanx for the service that you provide and I know that whenever you have to care for another with SCD, you treat them with compassion and mercy. I think that they need SCD teams in the hospital consisting of Dr.s, nurses, and techs that volunteer to trade with less experienced nurses. I think that that would work and would be better for everyone all around!!!

  4. Lisa
    Lisa July 10, 15:22

    See I was trying to stop crusing until I read this. What the $%#$%%^%$^% who does he think he is? This right here is why I dont go to the hospital now. I have to not be able to walk, hardly breathing and tears everywhere before I let my family take me to the hospital.

  5. Sickle Cell Warrior
    Sickle Cell Warrior Author July 12, 02:46

    @Lisa, yeah. For real. That was how I felt too. I had to actually step away to calm down before I could respond coherently. I just wanted to curse him out!

  6. Sickle Cell Warrior
    Sickle Cell Warrior Author July 12, 02:47

    @Bridgett, I think ALOT of education is necessary to medical professionals. It’s always shocking to me how little doctors know about sickle cell; and nurses even know far less.

  7. Sickle Cell Warrior
    Sickle Cell Warrior Author July 12, 02:49

    @Diva, thanks:) Many nurses did read it and responded to me with followup questions. I just wish that there was a way to publicize this more, and end the stigma and stereotype completely.

  8. Sickle Cell Warrior
    Sickle Cell Warrior Author July 12, 02:50

    @Bridget, I agree with everything you said. Ischemic pain is off the charts, and comparing it to cancer pain? That was ridiculous, especially coming from a person who never had sickle cell or cancer. Dilaudid is one of the few things that works for me but I HATE that drug. It leaves me all wonky, hallucinating and itchy. Not a good medication at all!

  9. Marie
    Marie January 09, 13:44

    I am a student nurse and I also have sickle cell. I never abuse the hospital and only go if I cannot treat it at home. The nurse who wrote that is very ignorant and if she can experience the tremendous pain it cause she wouldn’t be able to handle it. Many times my pain will reach up to a 10 and pain meds , morphine, dilaudid. Will not work right away Sometimes it’ll even take days to get rid of the pain. I am very surprised and disappointed to read this.

  10. Yarkeya
    Yarkeya March 31, 19:07

    OH HOW I WISH SHE WAS MY NIRSE SHE WOULD GET AN EARFUL.

  11. Yarkeya
    Yarkeya March 31, 19:28

    ITS FUNNY HOW PPL DOUBT THE PAIN BECUASE U DONT LOOK SICK OR WELL UR NOT CRYING. IT REALLY PISSES ME OFF WHEN YOU DO GET THAT ONE NURSE OR DOCTOR WHO DONT UNDERSTAND BECUASE THEY “THINK” THEY KNOW ABOUT SICKLE CELL WHEN ALL THEY KNOW IS THERE “TEXTBOOK” DEFINITION OF OUR DISEASE. I LIVE IN ARIZONA AND IVE HAD SOME BAD DOCS, 1 TELLING ME I SHOULDNT COME TO THAT HOSPITAL CAUSE THEY ARE NOT EQUIPTED TO HANDLE SICKLERS…WHAT? U DO HAVE PAIN MEDS CORRECT YOU CAN DO A BLOOD TRANSFUSION CORRECT,FLUIDS,OXYGEN,BLOODWORK, I CAN GO ON AND ON…HE WAS JUST AN ASSHOLE BUT I STILL GO. I USE TO HATE GOIN TO THE ER CUZ ALL U HEAR IS OH YOUR BACK AGAIN, WHY ARE YOU IN CRISIS THIS TIME (THATS WHEN U GIVE THEM A DUMB LOOK LIKE U SERIOUS), OH THIS IS MY FAVORITE..DRUG SEEKING,I HAVE METHODONE, OXYCODONE, AND MORPHINE AT MY HOUSE…COME ON PPL. I NO LONGER CARE WHAT THE DOCTORS OR NURSES SAY IF I GO TO THE ER 3 TIMES A WEEK UR GONNA TREAT ME OR ITS GONNA BE A PROBLEM, ILL BE A DRUG SEEKER THATS FINE I KNOW MY STRUGGLE AND WHO I AM. MY PAIN MAY BE A 7 BUT I WILL SAY ITS A TEN FOR FASTER TREATMENT BECUASE THEY WILL LEAVE U UNNATTENDED IN THE ER WHILE THEY TAKE THE LADY WITH A HEADACHE OVER YOU, SO BY THE TIME YOU GET TO ME IN YOUR COLD HOSPITAL AND TOOK 45 MINUTES TO GET ME A BLANKET I WILL BE A TEN OR U COME BRINGING ME A .5MG OF DILAUDID AND EXPECT ME TO BE IN NO PAIN. SO TO MY SICKLERS HOLD YOUR GROUND WITH THESE IGNORANT PPL WHO LOOK DOWN ON US AND DEMAND WAT U WANT REGARDLESS OF HOW YOU LOOK, I CAN SAY KNOW EVERYTIME I GO TO THE ER I ASK FOR THE DOC AND SAY LOOK I NEED 2MG OF DILUADID EVERY 2 HOURS AND 50 OF BENYDRYL EVERY 4 THAT .5 U TRYING TO GIVE ME IS NOT GONNA WORK AND IM NOT TRYING TO BE HERE LONGER THAN I NEED. I LOVE ALL MY NURSES AND DOC THAT UNDERSTAND AND JUST TREAT US AND GET US BACK TOO LIFE.

  12. Brandi, RN
    Brandi, RN May 11, 01:11

    I saw this post on the original website when it first went up, totally awesome when he got blasted by SCW! Here’s another interesting tidbit, that I thought everyone could educate healthcare providers about.
    Nurses and doctors feel manipulated when their patient is rolling around “acting” painful. They want their patient to know that they don’t “fall for it”. And thus the battle begins.
    It starts that healthcare providers assume that a person in pain, especially 10/10 pain, should be acting a certain way. There’s even a smiley face, sad face, crying face pain scale to further this ridiculous idea. I feel this stupid scale gives these uniformed healthcare providers steam in their little engine, providing evidence that if a person is indeed 10/10, they should be crying. As I’m sure everyone in this forum are well aware, not everyone responds to pain in the same way. Some people shut down, some people cry, some try to distract themselves, some can even fall asleep. Those that pass out from pain are most likely to be treated for their pain symptoms. “He said his pain was 10/10, but by the time I got back from the med room, he was fast asleep, so I wasted (threw away) that med!” When the patient awakens, he or she is, of course, STILL 10/10.
    There’s a condition called pseudo-seeking or pseudo-addiction. Patients with chronic pain issues, who are regularly under-medicated for their pain due to their not reacting to pain in the standard way. So these patients, who would normally shut down, distract themselves, fall asleep, whatever, are forced to use the little energy that they have left, to roll around in the bed, moaning and wailing, putting on the show that the nurse or doctor is needing to believe them. If this isn’t the normal way you react to pain and you’re dealing with a lot of pain, of course it’s going to be poorly performed!! Who’s got the energy to perform when their painful?! At that point the patient has realized, or experienced the neglect enough to know that they will NOT be treated for their pain unless they perform.
    It’s a very sad state of affairs. I do not have SCD, but I do feel for each and every one of you that do. Here’s another nurse for you who’s listening and on your side sans performance!

  13. Brandi, RN
    Brandi, RN May 11, 01:13

    *pass out guy is most likely to NOT be treated for his pain…

  14. Kelly
    Kelly September 24, 00:33

    I just found this website on Google while looking for cold weather clothing for SCD patients like myself.

    This is another example of why when you don’t know or understand someone else’s life you really shouldn’t judge.

    I was soooo mad when I read this! The idea that a SCD person’s pain must relate to a cancer patients is ridiculous. I’ve asked people who have broken limbs about their pain and then described mine and THEY told me that my crisis pain was worse!

    As for the manipulating the medical staff, well of course if you are like me and have lived with numerous hospitalizations for 26 years of life then you would know what medications work for you. And the idea that we like the strongest meds — well if you had pain that was a 30 on a 10 scale you would too. Also, some of us actually do not like meds or how they make us feel. I try to take as little as possible to do the trick

    I always request morphine and they repeatedly try giving me hydrocodone instead which doesn’t work. (I must be immune to it or something.) So, of course I am am going to have a “power play” of sorts with the nurse when she comes over with what she “thinks” I need.

    Also, regarding the comment that SCD patients are wasting hospital resources, how so? Many nights when I wake up at 1am, 2am, or 3am in the morning and have to go to the hospital for care they are all standing around the nurses desk chuckling about some random fascination of the moment. Moreover, for the record, if I go to my doctor or even a walk-in-clinic, my condition is considered an emergency and I am thus sent to the Emergency Room immediately.

    Why so? Simple answer. BECAUSE SICKLE CELL DISEASE PATIENTS GO DOWNHILL FAST WHEN IN CRISIS. As such, we need urgent care.

    I think sickle cell patients are a challenge to many hospital staff because is the ultimate learning experience for the hospital staff in learning to LISTEN to your patient and not just blindly administering treatments.

  15. Rodney Johnson
    Rodney Johnson September 27, 21:11

    I can not say how hurt I am to hear that people with Sickle Cell Disease might be faking their illness to get drugs. This to me smacks of racism. If we were Cancer patients would we be getting the same suspicious looks? If we had heart disease, would we be receiving such poor attention in America’s Emergency Rooms. Oh wait, there have been cases where people who had experienced a heart attack have been sent home with nothing more than and antacid or tylenol. This is another example why the Health Care System does not work. Study after study has proven that people with SCD do not seek drugs for recreational use. We seek it to make chronic pain tolerable. The idea that people use distraction techniques to deal with chronic pain has been documented (rocking , tapping, rubbing,humming…you name it. What ever works. I have rolled around in bed when I am experiencing a 10/10 crisis in order to get to sleep or get my mind off the pain. If there is anything I can say to the nurses and doctors who have a hard time believing their patients. You might want to consider a different career path. You may want to investigate why you feel the way you do. This may have absolutely nothing to do with the patient and more to do with your prejudice. I know that I have developed a higher threshold of pain after experiencing pain crisis for most of my life. I have had pain from an inflamed Gaul Bladder and I calmly got myself to the ER to be treated, when the average person would be doubled over and barely able to talk. It is not for the doctor or nurse to determine how pain the average Sickle patient is experiencing. Leaving a patient in pain for hours is equivalent to torture.

  16. Richard
    Richard August 30, 10:32

    WOW! This is the best response I ever read. I was educated, enlightened, uplifted, and sensitized to the needs of SCC patients. As nurses whether LPNs or RNs we need to support the patient and not our opinions. The nursing profession has mutated into a overly educated, highly arrogant, uncaring, and apathy infused profession. Yes we are also abused constantly by patients, doctors, and unfortunately other nurses, but we must maintain the caring aspect of nursing as well as professionalism. But I must defend the venting nurse on this…he/she may be burnt out, which is common in dealing with the rigors of the ER for even short periods of time. Nurses must remember to take care of themselves, because no one else will.

  17. India
    India January 07, 18:19

    If a person starts their statment with “This is not racial BUT…” It’s usually racial. I didn’t see the point of this person bringing up race if their vent was suppose to be about PEOPLE with Sickle Cell not their RACE. I know all carrers can be frustrating and we all need to vent sometimes, but this vent should have been kept off the internet. Ignorance and sterotypes ugh i’ll just leave it at that.

  18. Sara
    Sara February 26, 13:03

    I work in an ER observational Unit where we deal with SCC patients so much, that we have a protocol so that they can be seen faster. After a quick checkout in triage, patients are brought back to our unit so they don’t have to wait as long. In order to speed up the process, we have started keeping records on each patient of IV access, LOS, past PCA settings, any issues with meds. I have come to know many of my patients well and can even tell you what they are going to request to drink. While I want to get my patient’s pain under control, I sometimes feel that that big loading dose with a high basal rate knocks them out quickly so they don’t get the full allowed amount per hour. For this reason, I encourage zofran instead of phenergan, and atarax instead of benedryl at least for the initial dose. If there is no relief, then we can try the options that tend to sedate patients. It also seems like with the big initial dose, many of our patients end up with more pronounced side effects. For those of you suffering with the disease, how do you feel about toradol IM while waiting to get hooked up to the pump? I have seen some studies where Tylenol IV is being used instead of percocets because it has a longer half-life? Also if you have finally fallen asleep, how do you feel about the nurses waking you up for your Q2 oral pain relief? If my patient is still awake, even though there are no outward s/s of pain, I gladly give them PO meds, but if they finally seem to have some relief, I feel cruel waking them up to give pain meds. Any opinions?

  19. Sickle Cell Warrior
    Sickle Cell Warrior Author February 26, 22:51

    Hey Sara, posted this question on our FB page. You got a ton of responses to your questions.. http://www.facebook.com/SickleCellWarriors/posts/10151328481132849

  20. Hem/Onc Nurse
    Hem/Onc Nurse August 18, 06:31

    I am an oncology/hematology nurse and treat both cancer patients and sickle cell patients in our clinic. I have great compassion for both and treat both with love and respect. I had a situation happen this week and a sickle cell patient complained about me to my supervisor for “judging” her. There is a difference between judging and assessing a patient. My job is to assess and do no harm. Having treated SC patients in crisis for many years I understand the desperation and need for quick pain relief and I appreciate that they usually know what works for them. As in all areas of life there are varied personalities and unfortunately the ones who abuse the system put a bad mark on those who don’t. I would like to get opinions from sickle cell patients on this certain situation. This patient is a very young woman who has a scheduled appointment in our clinic twice a week to receive 1L of normal saline, 2 pushes of benadryl and 3 pushes of 2mg Dilaudid. This has been going on for months. She also takes a regimen of oxycontin and oxycodone daily. She is not in crisis but just scheduled for this twice a week. She walked in the clinic and appeared to be fine. I had never treated her before so I needed to do a thorough assessment especially regarding her pain level. As soon as the IVFs are started she begins to use a different voice and complains of feeling like holes are being drilled into her bones. Understanding sickle cell anemia and understanding sc crisis this confuses me. She didn’t call in and ask to be seen for a pain crisis she was already scheduled. She settled into her recliner and asked for the TV remote and then walked to the refreshment area and got some snacks. When I began my assessment she became upset and didn’t want me to ask about her pain. She said her pain was 9/10. I know that this is where SC patients will probably get mad at me for comparing SCC pain to cancer pain. I treat cancer patients everyday. Many with metastasis to the bones. Cancer in the bones is reported as one of the most painful things a person can experience. When a cancer patient says they are in 9/10 pain they are usually writhing in pain like they are in child birth labor. Sickle cell crisis is also this painful. I’ve had SC patients who were in such agony and their veins are so tiny and shut down that we could hardly get an IV started to help them out and I’ve cried right along with them. This patient was not in crisis. She was scheduled. Yes, it bothers me to administer 3 pushes of dilaudid to a patient not in crisis. She really put on a show following the second IVP of dilaudid. When her IVFs were completed and I was getting ready to let her go home she said “I always get another dilaudid push right before I leave”. Am I wrong in thinking we are doing this young woman no favors by participating in this? She said that this twice a week regimen keeps her out of the hospital. I understand how IVFs are important for hydration to prevent crisis but I don’t understand how twice a week dilaudid pushes keep her out of crisis. What happens the other 5 days of the week when she doesn’t get the pushes?
    I have treated many SC patients in crisis who only ask for IVFs and oxygen. I’ve treated many who know just what they need to get out of crisis and they’re usually right. At our clinic we don’t make people wait around and be cold and get even worse before we get to them. We have heated chairs and nice blankets. We are very compassionate and loving. I’ve been very stressed out since this patient complained about me “judging” her. I’m worried about her. When she does have a crisis is her drug tolerance going to be so high that she can’t get relief? Help me out here. Rip me a new one if that’s what I need. I need your guidance.

  21. Simon
    Simon October 30, 17:43

    Hem/Onc Nurse: I definitely do understand where you come from because me myself as a SCD patient couldn’t fathom going to the clinic that much to receive that kind of treatment! my doctor’s damn near sent me to rehab for admitting that i smoke pot, so I couldn’t imagine their response if i requested 6mg of dilaudid twice a week! lol I think it’s sad that this patient has succumbed to thinking that this is the only treatment that’ll work for her, but what’s even sadder is that the initial prescribing doctor allowed this “treatment regimen” to even be considered as an option! if her SCD is that severe, then she should be getting monthly blood transfusions like i do! I do encourage you to of course always err on the side of caution when questioning a SCD patient, or any chronic illness patient for that matter, about the validity of their pain, but this scenario just doesn’t add up in my opinion..

  22. Goya
    Goya July 17, 21:14

    WELL I WAS BORN WITH SICKLE CELL I DIDNT ASK FOR THE MEDS IN THE FIRST PLACE…THE HOSPITAL BEEN GIVING ME MORPHINE SINCE I WAS 6 YRS OLD AND UNFORTUNATELY IM NOT ADDICTED TO MY MEDICINES.ACTUALLY IM QUITE ALLERGIC TO EVERYTHING THEY GIVE ME…LONG STORY SHORT… IT’S NOT FAIR HOW I GET TREATED EVERYTIME I GO TO THE HOSPITAL AS IF IM SOME KIND OF ADDICT.. I GET SICK MAYBE TWICE A YEAR…I TAKE CARE OF MYSELF I NEVER NEEDED BLOOD OR ANY OF THAT STUFF… U CAN CLEARLY LOOK AT MY HOSPITAL REPORTS N SEE THAT I DONT RUN BK N FORTH.. BUT WEN I AM IN PAIN I DONT NEED SOMEBODY CRITICISING ME ABOUT IF IM N PAIN OR NOT… ITS REALLY RIDICULOUS U WOULDNT UNDERSTAND THE PAIN IF U DONT HAVE IT… AND HONESTLY THE PAIN MEDS DOESNT HELP HALF OF THE TIME… IT TAKES TIME FOR THE PAIN TO LEAVE,AND EVERY TIME I COME TO THE HOSPITAL I HAVE TO EXPLAIN N TELL THEM TO LOOK N MY RECORDS. ITS JUST NOT FAIR…POINT BLANK PERIOD STOP CRITICIZING PATIENTS ABOUT PAIN BECAUSE U WOULDNT UNDERSTAND THE PAIN. HELL I BARLEY UNDERSTAND IT… I COULD BE GREAT ONE MINUTE N THE NEXT IM N A WHOLE LOT OF PAIN… N TRUST ME..I WOULDNT WISH SICKLE CELL ON MY WORST ENEMY..THANK YOU FOR READING AND PLEASE B4 U JUDGE THE NEXT SICKLER CHECK THERE RECORDS…

  23. Mom of a child with Sickle Cell
    Mom of a child with Sickle Cell July 21, 19:21

    I really think that your so called ”Vent” is very disrespectful and it shows your ignorance of the disease. I have a child with sickle cell disease and it really hurts me to know that this is the kind of care that he has to look forward too. I thank God that my son’s doctors and nurses really care for him and This is the main reason that I have took it upon myself to educated myself on the disease. Also for you to have repeated more than once that this is not a racial thing, it indeed is a racial thing other wise you wouldn’t have repeated it. Cancer patients are no better than sickle cell patients and they don’t experience anything worse than sickle cell. When a cancer patient is being treated they are being treated to cure them but when a sickle patient is being treated they are just being treated to control their pain. So you tell me who is going through it the most! Cancer patients have something to look forward to, a cure! What do sickle cell patients have to look forward to? Nurses like you? Nurses who judge and ridicule them just for being in pain? How can you tell someone how much pain they’re in? I have seen this disease for myself and it’s not a joke and it’s just as serious as cancer.

  24. kay k
    kay k July 23, 17:00

    My comment is yes,there are a lot of Sickle Cell patients that do abuse the situations such as asking for more of the narcotics as mich as they can when they really don’t be in that much pain.I am a Sickle Cell patient myself and I have always told the truth about my pain.I have dealt with both nasty unprofessional doctors and nurses when it came down to my treatment which I don’t put up with because this is my life and by me being a mom my life and medical care I receive is very vital. I have never lied about my pain but I have been treated as if I was lying and I just waited until I left, with their names,whether they were doctor, nurse, I really didn’t give a damn because my life is in their hands I’m not there to waste anybody’s time so when I am forced to go to the ER, I am there to get myself well so I can go home to my son, everything else is irrelevant.

  25. yulanda
    yulanda September 20, 06:19

    First of all I have been that sickle cell patient in pain that was so bad that I have rolled around an wasn’t able to sit still I wish that the nurse can feel our pain an experience what we feel an wonder if the will understand then how bad our pain gets how can you judge what we feel smh

  26. adowden2000
    adowden2000 November 08, 14:37

    Thank you so much for sharing this. My daughter has it really bad and she also has avascular necrosis(AVN) of the hip. I am so scared for her bc she is now a senior in high school and will no longer be able to go to our Children’s Hospital, where they treat her pretty well so far. I pray that more nurses and doctors read your message and change the way they handle SCD patients.

  27. Stacy
    Stacy November 10, 04:39

    This article just made me sick to my stomach! Although, I don’t have sickle cell, I have a child that does. Trust me when I tell u that when I bring my child to the hospital, it is the last resort. Its because he is curled up in a fetal position on the floor, crying in excruciating pain. Saying things like help me me mom, make it go away mom, i cant move my legs. I could go on but I’ll save myself the melt down. Its the nurses like you that I despise. I dont care what u think about about the pain. YOU DO NOT HAVE SICKLE CELL. You need to find another career because you have no empathy for these people. Its nurses like you who poke my child wrongly causing him extreme trauma and makin it tougher for my child to want to come to the hospital. You talk like you think the hospital is a vacation spot where you can eat all u want. No one wants to be hospitalized and no one wants the nasty food. What sickle cell patients want to live their lives painfree and nurses, unlike you who will do their job and care for these patients. To, the nurse that responded, thankyou for giving a more accurate description of sickle cell patients and their use of the e.r department. May God continue to protect you. You are a warrior and I take my hat off to you

  28. Monica
    Monica November 10, 05:02

    It’s sad to see this illness is still taboo. I have a child and I do everything I can to avoid going to the hospital. Trust me with a pain that never lets up I could be at the hospital or on serious pain meds daily, but I’m not. I reserve ,y pain meds probably longer than I should and I hold out on going to the hospital definitely longer than I should. Ever other illness can seek out medical help with no repercussions yet SCD patients are made to fell ashamed for seeking help. We know our illness better than any nurse or doctor ever could because we are always looking for ways to prevent ourselves from going into a crisis. I can only pray for the SCD patients out there that they encounter a caring and understanding healthcare professional when they do go to the hospital because we have enough on our plate to have to deal with disputable professionals like you.

  29. jc
    jc January 22, 06:39

    Why do sickle cell carriers keep on propetuating this disease by procreating?

  30. Som Ebody
    Som Ebody March 01, 08:22

    Huh, I thought his vent was clear and well written. Kudos for him expressing his opinion without fear of the hate and vitriol that is spewed towards him.

    I would say that we need more nurses like him, but judging from the responses it appears there are already many, many more like him.

  31. Sickle Cell Warrior
    Sickle Cell Warrior Author April 17, 21:20

    @SomEbody, I don’t think you understand the plight of those with sickle cell disease. We are constantly maligned, judged, and mistreated in hospitals all around the country for a disease that we had no choice in getting. WE deal with excruciating pain, often on a daily basis and are just trying to live our lives to the best of our ability. We suffer, often in silence, until we can’t take the unbearable, agonizing pain anymore, only to get to the ED and get mistreated by our nurse. Have you ever had a charley horse? The pain of sickle cell crisis is 10 times that. Ever broken a bone? Or had a toothache? Now imagine that pain not just in your leg or arm, but all over your body. I was in labor for my twins at home for 12 hours, and I almost gave birth in the car because I am already used to the high level of pain that labor was a walk in the park. Obviously you don’t understand what we go through. If you did, you would understand why his vent was completely out of pocket.

  32. ddaniels122113
    ddaniels122113 April 30, 10:33

    This just happened to my brother. He went to the ER and just came back saying the doctor said he wasn’t in a crisis. He told the doctor what he needed to help with the pain and the doctor flat out refused. My brother said as soon as the doctor seen him it was like he made the assumption that he was there to get Hugh on pain meds. He could barely walk or breathe. It made me upset because I couldn’t do anything. He’s 30 and has been dealing with this all his life it’s in his medical records, some medical professionals refuse to try to understand or learn more about this disease and how it affects the people who deal with it.

  33. MikeJF150
    MikeJF150 May 06, 21:48

    I really felt like I was reading my autobiography of my life thus far battling sickle cell. It’s hard enough to fight for your life constantly, but even worse when your worst enemy comes in the form of those whom are suppose to care for you and help you. I’m 38 and with all the negativity myself and so many others face battling this disease…….I wonder sometimes “why do I fight to stay alive”. The pain from the prejudice and mistreatment is far deeper and stronger than the worst pain crisis we could possibly imagine. Your story makes me feel so close to you…..I don’t feel alone as I use too dealing with the very same struggles. Thank You from the bottom of my heart!!!!

  34. Sickle Cell Warrior
    Sickle Cell Warrior Author June 13, 01:36

    @Mike:) You are welcome brother from another mother.

  35. vbryant88
    vbryant88 July 08, 09:20

    As an individual living with SCD, AND an employee in a seperate hospital from where I get treated working as a Nurse Assistant, I found this article and the comments following very interesting. The comments, ( most, if not all of which I have read), have also been just as compelling, uplifting and a little troubling in some cases. I am a 27 year old female that has experienced, for the majority, great care from my local community hospital through the years from the staff and physicians that oversaw my care. WITH THAT SAID, I would also like to express that not all of my visits and/or admissions have gone so smoothly or played out without the familiar air of assumption that so many dealing with a crisis encounter. There are still some, whether they be the nurse or the doctor, that can altogether make the miscalculated assumption that you are not in the amount of pain that tell them that you are in. It is the most frustrating blow that a person can experience on top of the actual pain. It is so demeaning and almost altogether a shock to the system when you make the trip over to the hospital, a facility whose foundation is to heal, rehabilitate and care for its patients, and be judged. I myself only head over as a last resort and probably ever go 3-4 times a year when absolutely needed. After years of knowing my own body and seeing what has worked for me, I almost hesitate in those rare situations to ask for more medication by name when a nurse or other medical professional that are not familiar with me because I feel like they think I’m seeking a high. I rarely even cry anymore when I come into the ER because I know how to control myself to a point without having to shed so many tears. But when the pain is literally a 9/10 or 10/10, it becomes hard not to writhe around in your waiting room seat since all you can hope for quick relief from the area on the other side. I have seen so many different patients that I work with, whether it be cancer, infections, small bowel obstructions, dialysis, you name it that have various ways of dealing and expressing their pain, and no one should be cast as an abuser or the like for it. Pain is pain. And yes, sometimes the nurses and the aids get burned out at times because their assignments and/or floor is heavy and acute with a lot to accomplish for everyone’s individual care plan, MYSELF INCLUDED. However it does not give us the right to determine another persons personal anguish. I am so happy that I am on both sides of the lane and am able to work with such great healthcare workers and be treated by some of the best as well. Also, as a much needed last note, (especially @MomofachildwithSickleCell), NOT ALL CANCER PATIENTS ARE THERE TO BE CURED! Some have gotten to the point where their CA has come back, has metastasized through the body, or have chosen not to go through the tedious and excruciating process of radiation therapy and the like for their own reasons. Some patients that have cancer and that are in pain are treated as we call for “Comfort Measures Only”, until they pass. Just an FYI, and I speak this as a Sickler…The point in the end is that living with disease, chronic or acute, is not easy, but if you are surrounded by those who have compassion, it is a lot easier.

  36. Fibroblusher
    Fibroblusher July 16, 20:09

    This is the type of conversations that we need. Every time someone misspeaks about sickle sell disease, whether through ignorance or lack of compassion for a fellow human being, we should respond intelligently. Respond with knowledge and with the intent to raise awareness of sickle chess disease. I am a parent of a warrior who hates the ER. We are in the hospital right now. Her pain was better yesterday. She was able to go to the bathroom on her own. A nurse practitioner decreased her meds this morning. She slowly deteriorated and now need assistance to go to the bathroom. She’s pleaded for help all day. The doctors would not respond. It’s almost ten pm and doc has yet to respond. She has been basically ignored all day. Left to suffer. What can we do?? This warrior is a mother, wife, daughter, friend,and mostly a child of God. We love and support her. We need care facilities specifically tailored for people who battle the intolerable pain of a sickle cell crisis. Someone please tell me where to find a doctor or nurse who possess the compassion and knowledge about this dreadful disease.

  37. malthusian checks work
    malthusian checks work December 21, 11:17

    “are you paying for their treatment or medical care?”
    —more than likely yes!!!via taxes as most sicklers are on some kind of government assistance.

  38. Aperson
    Aperson January 25, 18:47

    But why dilaudid 2mg IV and benadryl 50mg IV every four hours around the clock, the patient barely able to finish a sentence and when I say we should separate it by an hour I get yelled at. Not once but most of the time. I want to feel compassion and it starts off that way but I encounter this at least once a week and it gets harder. When they are in pain I cry with them but I rarely see those, I see the one threatening to call administration Because I won’t push the IV when she has normal saline running.

Write a Comment

Donate

Support awareness & education for SCD

Announcements

Sickle Cell PSA

From CT Sickle Cell Org---my favorite SCD PSA.

Join the Sickle Cell Warriors Database

Become a warrior. Sign up to be a team leader/member. Get contacted directly by SCW about events and research in your area. YOUR INFORMATION WILL NOT BE SHARED/SOLD TO ANY THIRD PARTIES. (See privacy policy)
Example SS, SC, Beta Thal, Monroe, etc.
You will receive pre-screened research opportunities on sickle cell disease
You will receive info about the sessions on the advocacy training classes
Read more here: http://sicklecellwarriors.com/classes/
* = required field
Interested in local meetups?




powered by MailChimp!

Join us on Facebook!

Archives

Tweets!

have data = false

This is a demo store for testing purposes — no orders shall be fulfilled. Dismiss