Sickle cell

Editorial Team / Moderator · Dec 22, 2012

Krystal, I'm sorry you have to deal with chronic pain. But to say that no one here knows what it's like to live with pain every day would be just like saying all SC patients are drug seekers. There are many conditions that cause daily pain, some of which are suffered by ER nurses in this very forum. I don't think anyone painted all SC patients with the same brush (because we know that some are truly in crisis), but I know that I and many (most? all?) here have been fooled by drug seekers with many conditions, real or imagined, beyond SC. Drug abuse is a huge, huge problem in the U.S., and many drug abusers never make a street deal -- they obtain meds from doctors, ERs, etc. We get burned in the ER on a regular basis. How can we establish trust and develop that nursing bond when our patients are less than truthful? It gets disheartening, and I think that's what you're seeing here: frustration.

For any of you with chronic pain, I admire you for being able to go on with your lives despite the pain and reach the goals that you desire. And Krystal, best of luck with school!

K.SnowRN2b · Dec 23, 2012

Krystal, I'm sorry you have to deal with chronic pain. But to say that no one here knows what it's like to live with pain every day would be just like saying all SC patients are drug seekers. There are many conditions that cause daily pain, some of which are suffered by ER nurses in this very forum. I don't think anyone painted all SC patients with the same brush (because we know that some are truly in crisis), but I know that I and many (most? all?) here have been fooled by drug seekers with many conditions, real or imagined, beyond SC. Drug abuse is a huge, huge problem in the U.S., and many drug abusers never make a street deal -- they obtain meds from doctors, ERs, etc. We get burned in the ER on a regular basis. How can we establish trust and develop that nursing bond when our patients are less than truthful? It gets disheartening, and I think that's what you're seeing here: frustration.
For any of you with chronic pain, I admire you for being able to go on with your lives despite the pain and reach the goals that you desire. And Krystal, best of luck with school!

Thank you so much for attempting to understand where I'm coming from. I also, did not have the intent of coming across as someone who wants sympathy because of my condition as I know that many other individuals (painful condition or not) have it a lot worse than me and I am grateful for that. Maybe I just took the above commenters post so personal because I feel our disease (SC) can be overlooked by so many and seen for everything it isn't. It is understandably a very touchy issue for me however I didn't mean to step on anyone's toes, as I am just starting out and am certain I cannot foresee all the frustrations you'd experience being an ER nurse, but in some ways I look forward to those frustrating days. I sit in the bed of my local ER department as I type this, and it just hurts me personally to know that so many of my caretakers see me as a seeker until they actually speak to me (if they care to at all). All in all, I agree that prescription drug abuse is by far one of the GREATEST issues we have as a nation and there should be more light shed on the reality of the issue. Thank you so much for your well wishes, it gets extremely hard (for me as it does for others), but as stated in my bio I use my pain and my ability to see the perspective of the patient to try and help mold me into a more understanding caregiver. I look up to all of you, from a nurse to be, but more importantly from a young woman whose experience a patient has showed me the impact nurses truly make on the world. I hope none of you ever forget how important you are.

hiddencatRN, BSN, RN · Dec 24, 2012

I know this is an old thread, but many patients with SCA develop mild allergic reactions to pain medication from the constant exposure. I've had patients who experience not only itching, but also hives that pop up tracking along the vein where the medication is injected. It's not uncommon to get older patients who cannot take morphine at all anymore, and many patients have allergy information that specifies that they get benadryl prior to morphine administration to prevent the hives and allow them to continue to use that medication. If we give it IV rather than PO, we give it slowly as benadryl pushed quickly can indeed cause a "rush" which to those not looking to get high feels uncomfortable.

I haven't read the entire thread, but in case no one else did, there's a difference between tolerance, physical dependence, and addiction. Patients on chronic pain meds absolutely do develop tolerance and physical dependence. They require higher doses to have pain relief and if they take pain meds daily they can experience withdrawal if the medication is stopped suddenly. Addiction implies a misuse of the drug.

rksgray13 · Dec 24, 2012

I worked the medical onc for 2 yrs and this was my biggest challenge. And this is what I saw. MOST do not have a increased retic count, want their meds q 2-4 hrs with benedryl/phenergan rotation, do not want it diluted with NS, want it pushed fast, are fast aslee 5 min after calling for meds, smoke, do not eat right, do not stay hydrated or wear their O2, call early, get break through meds and narc suckers, blood transfusions, set their phone alarms for their next dose, and still want a last dose before wheeling out of their room. That being said and out of the way, there are a few that control, maintain, focus/channel, use less meds, and have far less visits to the floor. And I do understand staying ahead of the pain. What I really get disturbed at is why not use a PCA???? I have seen TWO, litterally, that will agree to it. Seems easier for them. JMO though. My education included that pain is subjective and will not kill you. So my prioritization would upset some SC pts on the floor. This is when I wonder about the PCA pumps. To get 2-3 SC pts in a group of 7-8 medical oncology pts with blood and chemo, meds 2-4 hrs apart (to the hr) makes a busy night and is frustrating to all. So anyway, I think benadryl is used both as an enhancer and an antipuritic in relation the pain med, which ever is their drug of choice.

thelema13 · Jan 31, 2013

I have a few SC pts that come to my ED in a 'crisis' and they proceed to dictate their normal med routine, all while texting, watching TV, not wearing their O2, no physical expression of pain other than the words from their mouths. Normal retic counts, normal smear for sickled cells, normal H&H. A 24g is sited in their thumb or foot due to lack of vasculature, fluids started, sometimes an arterial draw for labs.

Morphine and benadryl is given by the docs until labs are back, normally a 4-6mg dose of morphine. Once labs are normal, doc goes in and writes for discharge with a presciption for lortab. One of the pts gets so upset that she doesn't get one more dose 'to go' and she storms out without DC papers or the 'script!

The worst thing I have witnessed was an 8 yr old hooked up to a PCA in crisis, crying uncontrollably and I had to leave the room because I was getting upset, emotional. I have no sympathy for those who work the system for their drug of choice.

Sassy5d · Jan 31, 2013

I had sc that was visiting ER pt and registered for a free bus pass home. She didn't have her pain meds on her so she wanted given something 'to go' and a bus pass

dah doh, BSN, RN · Jan 31, 2013

I used to manage quite a few sickle cell patients back when I was a med-surg nurse. I found if I set limits and stuck to my side of the agreement, they would usually stick with theirs. I would bring their drugs every 90 minutes along with managing the other 14 patients. They could give me a 5 minute reminder prior to their meds being due. It was a matter of gaining their trust that you would come if they didn't make a pest of themselves. These patients had been hospitalized so much that they knew how to manipulate the doctors and staff so they weren't allowed to have PCA pumps. I always gave Benadryl along with their pain meds because it potentiated the effect of the pain meds. They usually asked us to push it fast but some figured out how to piggyback some fluid to speed the meds in. IV's were difficult to start so these patients would guard their 1 tiny IV with their life. I really didn't mind these patients once I figured out how to care for them. Most were young adults and independent with their needs; who had to be hospitalized for extreme pain. Before I left med-surg I met the politest most apologetic sickle cell patient ever...she had rarely been hospitalized for her condition.

canned_bread · Feb 1, 2013

I am about to finish in hematology and would like to make a few points. The haematologist will advise to use benadryl as an adjunct due to side effects of opoiods, and also because it potentiates the analgesic effects and sedating effets. If they are having an acute chest crisis, it is best not to give benadryl.

Sickle cell is EXTREMELY painful and chronic. Give them relief if you can, it's as simple as that. It's like cancer pain, who are we to judge?

The peripheral smear would be to see HOW MANY sickle cells there are, as they aim to keep the sickles down. In a sickle cell patient, there would never be 0. If a peripheral smear has 0, alarm bells should be raised.

HikingNinja, BSN, MSN, DNP, RN, APRN, NP · May 6, 2013

I once had a young male sc pt. He had no healthcare as he was trying to hold down a couple of low paying part time jobs because he wanted to be independent. He tried to do what he could to maintain his health. Did not smoke, drink or do drugs. When he would come in to the ER in crisis you could physically see the manifestation. He was not sitting up in bed, texting on his phone, laughing along with a tv show, or playing with his iPad while ringing the call light for his Dilaudid & Benadryl combo (together please & push it fast) and asking for a meal tray. He even had a payment plan with the hospital which he stuck to. I'll never forget the time when he came in & we had another sc in "crisis" in the room across from his. She was more typical of our sc pts & literally hit her call light every 3 minutes until we had to disable her alarm from the desk. What I didn't tell you was that we were coding a pt at the same time (who we got back & started on a hypothermia protocol). When she figured out we had disabled her call light she pulled it out of its plug int the wall and threw it. Then got out of bed & started yelling at us that she wanted to see the charge nurse because she should've gotten her Dilaudid hours ago- all this in front of the room of the now alive but hypothermia protocol pt with the wife sobbing at bedside. She was so disruptive we had to have her escorted out via security. All the while she is shouting about "bad customer service" and how shell go to hospital x down the road where they will treat her better. One of the other visitors that night, who had witnessed the whole loud event said to her as security was walking her out " that man was dying in there, don't you even care?" To which she replied " People die everyday, so what?"

When I could finally get to my sc young man he positively refused all pain meds even though he was very obviously in pain. He said to me "I never want to become that" . That was a few years back & every so often he does come in for crisis. He now has a better full time job with healthcare & gets regular monitoring with his primary. He still refuses all pain meds. I asked him how he does it & he said he made a conscious choice that day that he would rather be in excruciating pain than narcotic dependent. He said he found great relief in keeping fit, yoga, & meditation. While in crisis he has a series of visualization exercises he uses that he said helps quite a bit. He told me " I can't help that I'm in pain, but I can help how I respond to it"

Probably the most inspirational pt I've ever had. I'm glad I had the opportunity to take care of him.

Munch · May 14, 2013

In our emergency room(where I don't work..I'm med/surg) the narcotics are usually pushed in a 10cc n/s flush. It's not just certain patients that get it this way..it's just about everyone..just the way it is. Then they get up to the floor and the patients in true crisis are genuinely grateful for the relief. I've had others ranting and raving to pretty much any staff member who would listen about the terrible pain management techniques in our ER. I am a chronic pain patient myself including a survivor of a car accident in which my mustang flipped upside down over an embankment...I shouldn't even be alive but..Im saying this because I empathize and understand what pain both chronic and acute is(I also suffer from a couple of other chronic conditions I won't get into here). Anyway if a SC patient is having a crisis why not go to the hospital where their doctor that takes care of their pain is affiliated with? I don't care how much pain I am in when I am flaring up I will travel from the suburbs to New York city to where my doctor is(happens to be the hospital where I work anyway). That way being labeled as a med surfer isn't alleged and I can get adequate control of my pain. And as for the comment about SC patients not wanting a PCA if you really are in a lot of pain a PCA can be heaven sent(assuming the settings are meeting your pain management needs)...you also don't have to wait for the nurse to come bring the medicine. I guess it all depends on how much pain the patient legitimately is in.

TheSquire, DNP, APRN, NP · May 14, 2013

You can't argue with a PCA pump to step you up to dilaudid, or add in more benadryl.

Sicklecellwarrior · Jul 25, 2018

I have sickle cell anemia , have had it since I was born , just because labs come back fine does not mean a patient isn't sickling . To many times nurses make this mistake and treat patients like addicts and that is truly sad , too many times this has happened to me and it prevents nurses from giving the proper treatment and respect because the whole time we are looked at like addicts , then we end up getting sent home because test results said we aren't sickling then end up worse having to take a trip back to the hospital after we already been there but didn't get proper care because results show 'we aren't sickling' So Sad !