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Need Advice, Pato Nurse Relations

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Hello Nurses,

I need some advice on how to communicate with nurses as a patient. Before I get started on explaining what I mean, I want to first thank you all for your service and dedication to your fellow human.

i am a patient with a long and complex history, long story short on that. Heart condition, Severe Corachtatio. Of the Aprta repuaired 2x with OHS(Open heart surgery), and auto immune disorders(behcets, lupus, RA nd a few others). The auto immune is not curable but is managed with steroids daily. Other stuff dont work. When I have flareups with autoimmune(sores) I will take 10/325 norco q4-6prn. Most of the time a bottle of 30 will last 6mo-a year because I just beef up my steroids and bam, problem solved. Now sometimes I have bigger flareups and I need 30 norco in 10 days, like nust recently. Flare ups are sores on skin, in mouth and they have found them in my stomach and intestines and on organs, very painful. In major flareups I have to go to the ER for pain control. Now I am the type of person that really does not like pain meds, any narcotic at that. I like to be clear minded and free of those poisons. If I need then I take minimum dose. Now I alO hVe true allergies to meds like Morphine, poor paramedic clfound that out the hard way :/ . On top of Morphine (MS), I can not take Regland, Compazine, versed, NSAIDS(behcets is why), and I do not tke zophran because it does not work. I have had over 20mg of it at once did nothing for the nausea. As for the narcotics, due to so many surgeries I have a higher tolerance for them but I still make the doctors start at the bottom and work way up if needed. Coming out of last OHS because it so so botched I was on a Pump: base dose every hour was 5mg of dilaudid and an equal amount of ketamine, what ever the ratio would be, on top of that automatic dose, every 10min if needed, I could hit button for 1mg of dilaudid and equal amount of ketamine. Only did that in mornings after a long sleep because Id wake up in higher pain. I take promethazine daily for the nausea I get from the auto immune BS 25-50mg q6prn. Due to my allergy to morphine with any narcotic like dilaudid, fen, or demerol I have to have Benadryl for severe itching. Now here is m problem I am hoping I can get advice on. When I have to go to the ER for what ever reason, could be cardiac, could be autoimmune related pain, I find that I get the drug seeker label from the new people who do not know my history. The veteran nurses and doctors who know me some still work from when I was a baby, they know me and know I hate to be in the hospital, let alone the germ infested ER and I really hate having to take narcotics. As I said those vet nurses know that I am very educated, I know what works and I know what doses work. Example I know the 12.5mg iv drip of promethazine works perfect, but if it is oral I need 25-50mg. Same with the narcotics and what my allergies are. I know from reading articles on here that some of the drug seeking behavior is, "I am allergic to morphine and can only take dilaudid. Zophran does not work and I need promethazine. I need benadryl with my dilaudid cause I itch." Well in my case that is ll 100% true, but only difference is, I do not like the narcotic feeling or putting those poisons in my body. Drug seekers have made my life allot harder in the hospital when it comes to new staff. I Do not know how to tell them that I am not a drug seeker and I have real documented medical history that backs up everything I say. Just because I am educated does not mean I am looking for a fix. Personally I ask my nurses to push the Dilaudid slower. When you push it fast with chest pains for example, it makes it worse. The rush can cause your chest to hurt even more and when it takes ur breath away you have to take a deeper breath to catch back up and that causes more pain. Even when I was in severe pain, I do not want it slammed as they say. Even the head rush makes me sick from a slow push let alone a fast one.

So with all of the above mentioned, how do I communicate to a nurse that does not know me or my history that I am not in there looking for a fix and to waste their time?

Do I just not tell then anything and ac ignorant saying I do. Kt know what works, then it takes hours of additional pain or what not to get what will work, or do I tell them what works and my full history and take a chance of them blowing me off?

I have thought of just carrying a file of all my history but the file would be the size of a greyhound bus. Also if I am out of state or area at a new hospital of no record of me, what do I do then?

Any advice will be helpful and accepted thank you.

If you have any questions for me feel free to ask.

I just fear going to the er every time that I am going to get a nurse who does not know me or read my history to see that I am not in there to bs them and I am having legitimate issues.

P.S. The autoimmune sores in m stomach, intestines and colon can not be seen on film or just looking at me, they generally use a EGD upper n lower to see them, so when I walk in with severe pain and they can not see them cause it is inside me, kind of sucks to get a nurse or doctor who thinks I am faking it...

Thank You For Your Time!

Chris High

Nurse SMS, MSN, RN

Specializes in Critical Care; Cardiac; Professional Development. Has 9 years experience.

Nurses are to follow MD orders for pain meds unless there is a legitimate safety concern, such as low BP and other indicators. Don't worry about what the nurse thinks. Ask for your meds when they are due. If you are getting push back ask to speak to the charge nurse.

Altra, BSN, RN

Specializes in Emergency & Trauma/Adult ICU.

I'm an ER nurse, and I'd like to provide some perspective and pass along some advice that I give to patients with chronic painful conditions.

We do not, by definition, "know you" or "know what works for you". Your med regimen has been derived from an extended period of trial & error by you & the physician(s) managing your condition(s).

The very best person to work with you to proactively plan a course of action in the event of pain exacerbations is your own physician. But this must also be balanced by the fact that new symptoms may need evaluation, to rule out new onset life-threatening bleeding, for example.

This will be the priority of any emergency department provider: to rule in or out, life-threatening conditions. Complete medical, surgical and medication history information is absolutely necessary -- even a lengthy/complex history can be typed so that it fits on a wallet-sized card. The same with a med list. I would also suggest that it may be helpful to bring your actual prescription bottles for narcotics and other meds for which you are prescribed large/atypical doses by your own physician team. As you note in your post -- narcotic abuse is unfortunately a rampant problem and concrete evidence of your current med regimen will be helpful.

When making travel plans, I would suggest including some discussion with your physician team. In the event that you need to seek medical attention while traveling, it may not be realistic to assume that all healthcare providers you might encounter will have exposure to or knowledge of rare conditions such as Behcet's. Ask your physician what is most important for them to know, and add this info (recent procedures, recent lab results, etc.) to your history card.

Hope this helps.

dudette10, MSN, RN

Specializes in Med/Surg, Academics. Has 9 years experience.

Do you go to the same ER with your flare ups? Are there veteran nurses there who know you and know that you are knowledgeable of and instrumental in your treatment? If you end up admitted, ask your veteran, trusted nurse to give report about your capabilities, in addition to her usual ER to floor report.

We Have many returning patients in our hospital, and some of us nurses learn their chronic pain needs, and the patients learn to trust us and we, them. I have had one repeat sickle cell patient, and when we work together, it's like a well-oiled machine. Right after a frequent procedure that increases his pain post-procedure, I am right there with his pain med.

develop a relationship with a hospital, and you will probably see some of the issues go away.

Cricket183, BSN, RN

Specializes in Oncology (OCN). Has 16 years experience.

I am a chronic pain patient (also a RN, although currently on disability). I have Reflex Sympathetic Dystrophy (aka Complex Regional Pain Syndrome) which is a neuro-inflammatory condition that causes severe burning pain, swelling, color and temperature changes to my arms, shoulders, chest wall, upper & mid back. It also affects my heart (tachycardia & SVT) and stomach (gastroparesis). Early on in treatment, there were many times I ended up in the ER with uncontrolled pain, nausea & vomitting, and/or other symptom exacerbations. Although I do not have the allergies to contend with like the OP, I did quickly discover what worked best to help me most. Usually a cocktail of Zofran, Solu-Medrol, Dilaudid, and Clonidine (lessens the sympathetic response). Once we discovered this combo, I worked with my neuro & pain mgt doc to develop a letter that I could present to the ER doctor with this suggested course of action. I have never had anyone treat me like a drug seeker. In fact, I find that usually most nurses/doctors appreciate when I can give them a quick history and share with them what has worked well in the past. (Or maybe they were just to polite to say otherwise to my face, lol!). Luckily, I haven't had to make any ER visits in quite some time. I am doing monthly ketamine infusions and my symptoms have been under good control for the last year. OP, if possible work with your doctor and have them create a letter you can carry with you. Once the ER staff has ruled out any emergency or new cause for your presenting symptoms then they will have your doctor's suggested course of action to follow. It's especially helpful if you are out of town or at an ER that is not familiar with your history.

I would have conversation with your primary MD, with the social worker at the hospital that you go to the ER at the most. Talk about what works for your flare-ups. Have a plan in place, and standing orders available at the ER. (Some call it a "contract").

I would also think about home health. A nurse could come and just assess your progress/pain and the like. If you need services at home, you should be able to speak with the hospital social worker to put those in place. Even a pain clinic. The goal is for you to function and be at a manageable pain level, with adequate pain control--so that you can attempt to avoid flare-ups. And home health could assist you in this, speak to your MD.

Meanwhile, get a standing order/contract in place at your local ER, so that you are able to control your acute episodes. Talk about getting into a home health situation, so that you have a case manager and social worker. And above all else, leave no stone unturned as far as consistent treatment that may be available to combat flare-ups beyond the prednisone. And that you are compliant.

To be honest in my years in the ED, the chronically ill patients that we see who have flare ups and require aggressive treatment for acute pain--it is a frustration on the part of the nurse that YOU have to live this way. And mind working overtime to figure out what can be done differently. Don't get me wrong, the ED is full of "junkies looking for a fix" mentality (and I am not saying that is correct)--however, it is more of a "what can we do differently" for our chronically ill patients who have any number of acute flare ups. We have to look at the whole picture--nurse's motivation is for you to function.

Best wishes!

EmergencyRN22

Specializes in Emergency Room.

Have the ER doc call your Pcp or pain management doc?

We also have frequent fliers who have standing orders, however they have to be acknowledged and signed by the ER dr each visit.