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What is up with these Sickle Cell Patients?!

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by BrandNewbieNurse BrandNewbieNurse (New Member) New Member

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i don't work with "sicklers" much where i am currently living, but when i lived in n.c., there were the same 4 or 5 who would come into my local er. other than being very specific about the dilaudid dosage and where to find a vein, they were great people. all of them. they were grateful and always understanding. of course, their disease means pain for them, which will eventually lead down a path of narcotic abuse for most of them, unfortunately. what other option is there? they have pain. microvasculature oxygen deprivation leads to pain, very real pain.

just as there are other patients out there that are manipulative, lying, or rude, they exist within the person, not within the disease.

i disagree with this. admittedly the chronic pain and narcotic treatment will likely lead to dependence. that is not the same thing as abuse, and i don't believe abuse is inevitable for "most."

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merlee has 36 years experience.

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Many patients with chronic illnesses develop certain common traits. There may be a level of expectation that seems to be difficult to attend to.

I cried through a cardiac cath because I have a herniated disc in my lower back and I was in terrible pain. Every time I asked for pain meds I was grilled about my chest pain - never more than '2' - and had to explain over and over that it was my back and leg. I had to BEG for my ORDERED prn meds, even asked them to call my room before thay walked all the way down the hall.

Pain is what the patient tells you it is. Period.

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Lovely_RN has 11 years experience as a MSN.

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I think a lot of people, in and out of the health care professions, don't understand this. :confused:

I disagree with this. Admittedly the chronic pain and narcotic treatment will likely lead to dependence. That is not the same thing as abuse, and I don't believe abuse is inevitable for "most."

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Lovely_RN has 11 years experience as a MSN.

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I'm sorry you had to experience that.

I have worked with nurses who had "issues" with giving prn pain medication because of their personal biases against narcotics.

Many patients with chronic illnesses develop certain common traits. There may be a level of expectation that seems to be difficult to attend to.

I cried through a cardiac cath because I have a herniated disc in my lower back and I was in terrible pain. Every time I asked for pain meds I was grilled about my chest pain - never more than '2' - and had to explain over and over that it was my back and leg. I had to BEG for my ORDERED prn meds, even asked them to call my room before thay walked all the way down the hall.

Pain is what the patient tells you it is. Period.

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OP, I have cared for a few sickle cell patients as a CNA and it really depends on the person. Most have been sweet kids. One was just a jerk, whether sick or not. My rudest patient by far, though, is a paraplegic who is just an out-and-out A-HOLE.

Just because someone is in pain, it doesn't give them a license to be awful. I know a few people who are in chronic pain and have known them since before the pain started. The A-HOLES are still A-HOLES, the nice people are still nice.

So, don't judge the sickle cell patients by their disease, judge them by their behavior.

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canesdukegirl has 14 years experience as a BSN, RN and specializes in Trauma Surgery, Nursing Management.

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There are some great posts here on this thread. I worked with a SCD pt years ago who was a VERY angry girl. She was demanding, she threw temper tantrums, she was controlling and every single nurse on my unit dreaded being assigned to her. Most of the nurses made fun of her during report and she was labeled a "high maintenance" patient. So one day I was assigned to her. She tested me to see how far she could push me and therefore establish boundaries. After I had completed all of my AM duties, I went into her room again to "straighten up", but really my objective was to see what this gal was thinking. She was demanding, tearful, frustrated, etc. So I pulled up a chair and just LISTENED. Turns out that she just wanted someone to care, someone to not judge her, and someone to empathize. I asked her doc to order a consult with one of our spiritual guidance counselors. This counselor specialized in guided imagery, breathing techniques and relaxation techniques. (I don't know why they called him the "Spiritual Guidance" counselor because he mostly did stress relief teaching.) Let me just tell you, it worked like magic! My pt was less demanding, wanted to work with staff and learned how to manage her pain using a combination of narcotics, O2, and techniques she learned from the counselor.

I think in the end, chronic pain pts just want someone to understand their pain. They don't always use the right tone, verbiage, or sentiment in getting this across to health care providers. I cannot possibly understand their pain, but I am going to try.

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Psychtrish39 has 13 years experience as a BSN, RN and specializes in MDS RNAC, LTC, Psych, LTAC.

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I have found over the years of my nursing career with people in pain be it sickle cell crisis, cancer, neuropathic , acute or chronic pain I always have medicated them regardless of their behavior . I have found I never have had issues within myself about giving pain medication as long as I am not snowing them and its safe to do so. The worst things I have had to deal with were coworkers doubting my judgment and saying things to me about me giving medication to persons they called "drug seekers". I have seen this said even about the terminal and dying geriatric population.

I believe pain is the 5th vital sign and I treat it as such thats what I was taught in nursing school . Pain is what the patient says it is. I have never had a patient not say thank you for helping them even if they were rude until they got relief and once pain is allowed to rage it takes twice as long to get on top of I have seen this many times when working night shifts over the years.

Pain is such a strong neuro stimulus that the few times in my life I had bad pain such as childbirth and renal stones. I was not a happy camper. I try to remember that even when they are running my legs off. :nurse:

Edited by Psychtrish39
added a word for clearness

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Anyone who has to live with severe, unrelenting pain their entire life is probably going to be a bit grouchy and bitter at times. I know how much of a baby I can be when I'm in pain (and thankfully, the only pain I've really experienced in my life is menstrual cramps and wisdom teeth removal); I can't imagine having to deal with pain like sickle cell patients do.

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Faeriewand has 8 years experience as a ASN, RN and specializes in med/surg/tele/neuro.

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Great discussion everyone! I've learned much from reading the entire thread. Thanks OP for starting this thread. :)

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rkitty198 has 11 years experience as a BSN, RN and specializes in Med Surge, Tele, Oncology, Wound Care.

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I do understand your frustration OP, I do. Yet after my personal experience I think differently now.

My mom was an alcoholic and addicted to pain meds. She had Hep C and her liver was shot. She quit drinking, smoking and was on the pain meds because her liver was so large it was very painful. She wanted to live, yet was told to think about hospice because she was end stage from Hepatitis.

She went to the ED because her abdomen was hurting. Sure she had been in this ED before seeking drugs, so she was judged. She was given dilaudid IV and then was sent out. She was crying as my sister was wheeling her out of the hospital because she was still hurting. (why they let her go in the shape she was in I have no idea).

She came home from the ED in the worst pain of her life and she eviscerated. Her ascities was so bad it pushed down and through an existing hernia the fluid in torrents came pouring out. Her intestines were within days of falling out the huge gaping hole in her stomach.

She went back to the ED in an ambulance diagnosed with peritonitis, with no chance of surgical intervention because of her 23 hernias all over her stomach and her prior health issues. We put her on hospice the next day.

I really believe that if she wasnt judged as a drug seeker she would have recieved the appropriate pain relief and may not of had to suffer the way she did. Sure she was a seeker, yet she was also in pain. As a nurse, I was furious with the ED. I lived out of town and it was a good thing I did because I would have really been her only advocate.

Pain is real, even if it is psychologial. I am sure evisceration is painful, yet the hospital staff only saw her as an addict and didnt want to treat her.

Sometimes I feel so sad, because I miss my mom, because I take care of everyone else's mom in pain, yet I couldnt get to mine in time. So when you judge someone as an addict, think that this could be a family member of yours and they still deserve to be treated with compassion and respect.

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I do understand your frustration OP, I do. Yet after my personal experience I think differently now.

My mom was an alcoholic and addicted to pain meds. She had Hep C and her liver was shot. She quit drinking, smoking and was on the pain meds because her liver was so large it was very painful. She wanted to live, yet was told to think about hospice because she was end stage from Hepatitis.

She went to the ED because her abdomen was hurting. Sure she had been in this ED before seeking drugs, so she was judged. She was given dilaudid IV and then was sent out. She was crying as my sister was wheeling her out of the hospital because she was still hurting. (why they let her go in the shape she was in I have no idea).

She came home from the ED in the worst pain of her life and she eviscerated. Her ascities was so bad it pushed down and through an existing hernia the fluid in torrents came pouring out. Her intestines were within days of falling out the huge gaping hole in her stomach.

She went back to the ED in an ambulance diagnosed with peritonitis, with no chance of surgical intervention because of her 23 hernias all over her stomach and her prior health issues. We put her on hospice the next day.

I really believe that if she wasnt judged as a drug seeker she would have recieved the appropriate pain relief and may not of had to suffer the way she did. Sure she was a seeker, yet she was also in pain. As a nurse, I was furious with the ED. I lived out of town and it was a good thing I did because I would have really been her only advocate.

Pain is real, even if it is psychologial. I am sure evisceration is painful, yet the hospital staff only saw her as an addict and didnt want to treat her.

Sometimes I feel so sad, because I miss my mom, because I take care of everyone else's mom in pain, yet I couldnt get to mine in time. So when you judge someone as an addict, think that this could be a family member of yours and they still deserve to be treated with compassion and respect.

Your post is so, so sad. I am moved to tears to know that your mom experienced this terrible thing. I was even more moved to tears by your last paragraph...I'm so sorry for you.

I am a student, and this has been a great thread for learning. Thank you all for educating less experienced people in a patient manner. I am 41 and tend to be a little jaded about life in general at times, so a thread like this will go a long way to remind me to keep an open mind and a compassionate demeanor when I am working as an RN.

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NRSKarenRN has 40 years experience as a BSN, RN and specializes in Vents, Telemetry, Home Care, Home infusion.

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please see our previous thread on topic:

sickle cell crisis and pain management?

sickle cell disease, acute crises involve vaso-occlusive pain episodes often with tissue ischemia occurring.

Quote

acute pain in patients with sickle cell disease is caused by ischemic tissue injury resulting from the occlusion of microvascular beds by sickled erythrocytes during an acute crisis. chronic pain occurs because of the destruction of bones, joints and visceral organs as a result of recurrent crises. the effect of unpredictable recurrences of acute crises on chronic pain creates a unique pain syndrome.2,3

acute bone pain from microvascular occlusion is a common reason for emergency department visits and hospitalizations in patients with sickle cell disease.4 obstruction of blood flow results in regional hypoxemia and acidosis, creating a recurrent pattern of further sickling, tissue injury and pain. the severe pain is believed to be caused by increased intramedullary pressure, especially within the juxta-articular areas of long bones, secondary to an acute inflammatory response to vascular necrosis of the bone marrow by sickled eythrocytes.5 the pain may also occur because of involvement of the periosteum or periarticular soft tissue of the joints

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

Manipulative behavior occurs in minor percent of patients related to inadequate pain control, misunderstanding of disease process and/or staffs lack of experience in dealing with sick sell crisis with subsequent labeling of drug seeking behavior in "frequent flyers". links in above threads offer excellent suggestions for dealing with SCC clients, including thought that palliative care should begin at birth in these individuals. pain and care contracts with care plan for pain management on file in er to deal with crisis situations, adequate iv hydration, education and dedicated team all helps to effectively deal with patient issues.

Edited by NRSKarenRN
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