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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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On 2/2/2011 at 3:42 PM, joyouter said:

Thanks for this, Your observations are very accurate. The pattern you described is the pattern of chronicity, both from a) the disease and complications and b) the negative effects of pain management which at present, has a greater success rate using narcotics, and consequently, the pattern of secondary effects. Pain is a powerful phenomena and has been described as " leaving a memory in the spinal cord, or perhaps, the subconscious. Neurological pain is similar, and nurses are often at a loss to understand if the patient is describing actual physical pain or the pain memory embedded in the neurological system. The approach is to recognize and honour the patient as they describe their pain and treat it as such. The overall approach is to respect and treat what the patient describes which is often why nurses become frustrated and angry when we might interpret this as treating a "habit" rather than an entrenched memory of pain, which to the patient remains real. There remains so much research and work about pain, effects from Sickle Cell and nursing knowledge and practice. :heartbeat Just a thought.

I have really enjoyed your posts in this discussion. Excellent food for thought. Thank you. I hope I never stop honoring patients as you describe. What do you do when you are running out of options to manage the patient's pain? Do you contact the provider to discuss something for breakthrough pain? What if they have poor renal function or their RAAS score is low, but the patient is reporting moderate to severe pain? Beyond environmental and alternative interventions, how do you have that discussion with your patient when their next available pain med is hours away? I feel that I will struggle with this as a new nurse. 

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On 8/23/2017 at 2:52 PM, hppygr8ful said:

Ok ladies and gents and children of all ages. Gather round it's story time. Some of you know this about me but as a qualification I am a chronic pain sufferer as well as an alcoholic in recovery and sober since 2004. I have 3 different auto immune disorders and have experienced first hand the disdain by some nurses who think I couldn't possibly be in pain because I can watch TV and eat a bowl of ice cream.

I had a patient a few years ago who had chronic pain and long term depression (the two often go hand in hand ) She had attempted suicide and landed in my psych ward. She was a clock watcher for sure. I had several conversations with her about her illness, pain and depression I never treated her with anything but kindness and believe me she could be mean as a wet cat when her pain got bad she felt the nurses and staff weren't hearing her. She told me that she really wanted to get of opiate pain medication but was afraid. I got her a referral with a rehab specialist and by the time she left the hospital we had successfully detoxed her and taught her some new pain management skills. She went to rehab did well there and as we live in small community I saw her on occasion but never has reason to say more than hi. One day I saw her WALKING without her wheelchair and I had to tell her how great she looked. I also asked her what had changed to bring about this transformation. She smiled and said "You were kind to me" . That is why I don't make judgements about my patients and also why I stay in the profession.

Hppy

Love this story. Thank you for sharing your personal experience. Vulnerability and kindness are brave and beautiful. Nursing has really challenged me to withhold judgment- it is an ongoing process.

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traumaRUs has 27 years experience as a MSN, APRN, CNS and specializes in Nephrology, Cardiology, ER, ICU.

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I care for several ESRD pts with sickle cell. I try to manage their pain and work with them to develop a pain protocol. They do have very high tolerances and I'm very careful to always document completely as we (providers) now have a huge risk in prescribing chronic opioids. For sickle cell pts though this is what works. 

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anewsns has 8 years experience and specializes in Neurosciences, stepdown, acute rehab, LTC.

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To be fair, poor pain control, especially in early stages of crisis, can alter the course of their ENTIRE illness! Sickle cell patients know this better than healthcare providers. I think they are just cranky from the pain and also having to advocate for themselves all the time against providers who don’t always believe them and becuse they are so difficult , we kind of avoid them and that makes them even more difficult! They’re sick and tired of being sick and tired. The more severely affected patients seem to have awful behaviors. Despite my theoretical understanding of these patients, I do not like caring for them in reality at all! Fibromyalgia patients are often like this as well. Pain conditions suck for people. 

Edited by anewsns

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catsmeow1972 has 15 years experience as a BSN, RN and specializes in OR.

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I spent a year working in a small town ER and have memories of 2 standout patients. The best way to describe this town was ‘if Mayberry had a ghetto.’ Biggest employers were the prisons and Wal Mart. This little ER saw a lot of drug seekers and folks that used the ER as primary care for lack of any other access.

Pt #1 was a young lady with sickle cell. Occasionally came in from the county jail with a deputy escort. Definitely veered towards addict tendencies. If she was wanting more dilaudid than she currently had, she was belligerent and mean. If she was veering into crisis, she was quiet and curled up on the bed.

pt #2 was also a young lady with ESRD, hypertension, a seizure disorder and I think a few other things, and as non compliant as they come. She went to dialysis very infrequently and of course had all of the sequelae that comes with that. Her cocktail of choice happened to be Demerol and Phenergan.

They both had reputations for being generally horrible patients. You knew who they were as soon as EMS radioed with report. The eye rolling and nasty comments started.

i always got on well with the both because I figured with #1, it wasn’t up to me to judge crisis vs ‘fix.’ If it was a fix she wanted, sorry I’m not into rehab, she still gets respected and comforted like any other patient. With #2, noncompliance was her choice. My private thoughts were that I think that she knew she wasn’t going to live very long so she was going to enjoy life and for her that meant going out and partying, even if that inevitably landed her in my care. I never disrespected her and kept her comfortable when she was my patient even if that meant requesting her Demerol and Phenerghan when she asked.

Point? Yes, some people are just plain nasty but more often it’s a learned defense mechanism. If you try to determine the difference yourself (instead of listening to others) you can make a world of difference to someone, even if only for a little while. 😊

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Persephone Paige has 15 years experience as a ADN.

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They've basically been handed a raw deal. Many of the sickle cell patients I've had were in a lot of pain. Try and ask yourself how you would feel were this your fate? 

1. Very great chance of dying young

2. In pain

If course they are drug seeking, their tolerance is sky high. Let it roll off... 

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PhyllisMSN has 30 years experience as a MSN, RN and specializes in Critical Care, Emergency Department, Informatics.

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I have worked my entire career in urban areas. These patients are very sick and in so much pain. They have been in the hospital since they have been infants. They have also been on hard narcotics since they were

little children. It is a terrible disease and sometimes I find myself getting frustrated with them. I try and put myself in their shoes. They have had healthcare providers to look at them like they are nothing but drug addicts. They do not have normal childhoods. 

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On 3/24/2012 at 8:25 PM, simonemyheart said:

As a nurse with sickle cell I am offended by this post. Very rude :(

Please be specific.  Perhaps a calm, clear discussion would help all of us to become better nurses.

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heron has 40 years experience as a ASN, RN and specializes in Hospice.

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On 2/11/2019 at 10:04 PM, Kooky Korky said:

Please be specific.  Perhaps a calm, clear discussion would help all of us to become better nurses.

After 7 years, I suspect the poster is long gone.

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NurseinHyrule has 5 years experience as a BSN.

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WOW. Considering sickle cell disease is predominately seen in African Americans, I'm going to say you may want to reevaluate your choice of career. I always say; even if the devil himself drop dead in front of me, if he's a full code then I will resuscitate him. Being a nurse means being a nurse for everyone.

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