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Title: Hospitals need to be informed Post by ClusterChuck on Jun 13th, 2004, 7:17am OK, I was not going to say anything about this, but in chatting with Svenn, this morning, and relating the following story, he felt that I should pass it on to the family to show another area where we, and OUCH needs to work. I mentioned in another thread that I had a minor “problem” that kept me from driving up to my parent’s house. Well that problem was another minor heart attack. That is not why I am writing this thread. I am not asking for your vibes, I am fine. This was my third one. It is getting to be like a walk in the park now. Don’t worry about me. What this thread is about, is the treatment clusterheads get when they are being treated for something else. I had orders on my chart for oxygen “as required”. I was finally transferred to a regular room. I was not on oxygen, at this time. I was hooked up to all sorts of other wires and tubes, as you can imagine. I started to feel a ch hit coming on. I pressed the call button and said I needed oxygen. My nurse came in and started to hook my finger up to get my O2 saturation levels. At this time I was at about a KIP4. I politely told her I didn’t need that, as it was not a respiratory need, it was for my cluster headache hit I was getting. She said, that was alright, she knew what she was doing, and continued on with what she was doing. I yanked my hand back and said to just get the non-rebreather mask, and get the flow started. She started to get perturbed, but did start to then get the O2 setup. She was behind me so I did not see what she was doing. She then came forward with the nose canola. I told her, in a firm voice, (now at a KIP5) “No, I said a non-rebreather mask at 15 lpm!” She got real huffy, and said, “Look, I KNOW what I am doing, so kindly let me do my job!” At that point, I lost whatever diplomacy I had and let her have it. I demanded, in a rather loud voice, the non-rebreather mask at 15 lpm immediately. Of course there were, maybe, one or two, or more, expletives in there, too. My ex-wife and 16 year old daughter, who were also in the room, laid into her, too. The nurse called for her supervisor and assistance as she felt we were going postal on her. She was right! She did get the O2 set up going, and I started sucking it down. They were amazed that I could empty that bag, at that flow rate. By this time I was at a KIP7, and trashing the bed pretty well. (The following, I don’t remember, as I was, what you might call “otherwise occupied” at the time, but my wife told me about it.) The nursing supervisor said that it looked like I was in extreme agony, isn’t there anything that they can do? My wife said no. They all said they had never seen anything like that. I was up on my knees, with my head buried in my pillow, screaming and bouncing around. I kept kicking the covers off, and of course, you know what those hospital johnnys are like, yup, my bare butt and all were right out there swinging in the breeze, for all to see and envy. The bonehead nurse kept trying to cover me up, and I kept kicking them off, and the nursing supervisor said that she did not think it was very important to take modesty into consideration at this point. The nurse said, but it is procedure to make sure that each patient is covered. The supervisor said, this is a unique situation, just make sure the door is closed, and when it is over, we can then correct whatever needs to be. At that point, my wife assured them there is nothing they could do, and asked them all to leave, and she shooed them all out and closed the door. After the hit was over, I called the nurse back in, to hook up all the wires and tubes, as I had ripped them all out in my thrashing. She them proceeded to give me a lecture about being more careful and not pulling everything all out (I wanted to belt the bitch). I apologized to her for yelling at her, and tried to explain to her the urgency of getting the O2 on as soon as possible. She explained the she has been a nurse for many years. She is a professional and knows what she is doing. She knows the proper procedure. I told her, being the professional (trying to butter her up) that she is, to better understand cluster headaches, I think she should do some studying about them so that she can professionally deal with the next patient that she gets with them, and that I would be happy to give her my knowledge of them, as I have been dealing with them for over 26 years. She told me she knows about headaches, and was totally unreceptive to any thought that she might not know something. I am sorry for the length of this, but I needed to get the full idiocy of this out. We need to get the word out to hospitals that when a ch’er asks for oxygen or imitrex, WE NEED IT NOW! And we need our oxygen in a certain way! Chuck |
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Title: Re: Hospitals need to be informed Post by ClusterChuck on Jun 13th, 2004, 7:17am As a side story about this particular nurse “professional”, when the doctor FINALLY said I could go home (with strict restrictions) the nurse told me that when my ex got there to pick me up, she would have my paper work for me and get a wheel chair to take me down. I asked about all the wires and stuff that they had me hooked up to, and she said those could all come off now. So I proceeded to take them off. She left, and I got dressed, and got all my stuff together, and sat there waiting for my wife. As I was sitting there waiting, I noticed I still had the IV thingy in my hand. I figured I would take it out. So I did. I pressed a paper towel (I know not the most sanitary, but it was all I saw in the room) to the spot to let it clot. After sitting there for about 20 minutes, the nurse from hell came in, and saw my hand, and went ballistic! She started screaming and yelling that I can’t do that. I told her that not only could I, but I did! She was NOT a happy camper! Boy did I get yelled at! But I was sitting there chuckling away! I thought it was great to get her so freaked out! Heehee! I am SUCH an A$$HOLE! |
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Title: Re: Hospitals need to be informed Post by Kevin_M on Jun 13th, 2004, 7:53am She seemed mighty proud of her professional demeanor, but how 'bout some professional knowledge, and right now though, get some serious damn oxygen. Cannola tubes! I know the way you felt at that time and actually you were polite to not laugh at her professional pride, just turned around and showed her yer @ss. She should have been made more informed of your "other" condition and have been prepared for it, that would have been more "professional", you are right Chuck. We have lots of informing to do ourselves. Kevin M *edit* I'm an "on my knees with my head in the pillow" type too. But I usually got my own pj's on. :) Hope the tickers going to be ok Chuck. |
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Title: Re: Hospitals need to be informed Post by Lizzie2 on Jun 13th, 2004, 8:06am Kevin said it better than I would have! I was just going to say what about the "procedure" of listening to the patient and finding him adequate relief of his pain as fast as possible!!! Patients usually know what works for them. How old was this nurse???? Geeeeeeeeeeeeeesh. Hope you're doing better now, Chuck!!! Hugz, Lizzie |
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Title: Re: Hospitals need to be informed Post by BarbaraD on Jun 13th, 2004, 8:12am Oh Chuck - I'm not laughing at you, I'm laughing with you :)... You are SO right that we need to educate these "professional" nurses who know about headaches. Your experience is just ONE of the horror stories from these profesional people. The last time I got put in the hospital (and I refuse to go back), they almost killed me four times with their professional knowledge. One idiot mixed my meds (for an IV) together - I just happened to ask what she was giving me - When she told me (the needle was already in the IV) I knocked her and the needle across the room and told her to find out what the *((&& she was doing before she gave medications. She had two meds mixed together that would have been lethal. The prissy B*(&^&^ had the nerve to tell me she knew what she was doing! We called the doc in on that one (and the pharmacy) and found out that I KNEW what I was talking about. She never even apologized. When I got my bill - I wrote the BOD of the hospital a nice letter (I had kept my own chart and had enough amunition to hurt them in court). I received a call from the DON and my doctor. I just told them I wasn't paying for their stupidity and incompetent help and if they sent me another bill, my attorney would be in touch. My doctor was on the BOD and I think he said his say about it also (he was upset also about the treatment), and I never got another bill from them. I think nurses these days spend most of their time writing charts (to CYA) and forget patient care. They don't listen to the patients who probably (in our case) know more about what to do than they'll ever know. If anyone has ideas on how to educated these "professionals", I'd like to hear it. This may be a project for chapters as they form. This way we could get the word out in all areas of the country. Maybe as we build up liasions with headache facilities, we can get into some nursing schools with some info. Hugs BD |
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Title: Re: Hospitals need to be informed Post by Lizzie2 on Jun 13th, 2004, 8:44am Hey Barb, I got 78 other students in my class this summer that I'm slowly working to "educate" about CH. One of the big reasons for why I went into nursing was to do patient and physician education about headache disorders. Guess I should include other nurses in that group, too! At any rate, they teach us pretty well about how to care for patients in our school, but when we get to the part where we learn about headaches......I might just have to say some things! Hugz!! Lizzie |
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Title: Re: Hospitals need to be informed Post by KingOfPain on Jun 13th, 2004, 9:52am Chuck, 1st off, I hope all goes well with your heart. So glad you are okay. Take care of yourself please. 2nd, I had kind of the same experience with O2 & the ER. My visit wasn't heart related, it was CH. One of the few true 10's I have had. It was hell on earth. My "health care professional" was an uninformed PA. I told him in many colorful words to get rid of the f'n canula [sp] thingy at 2 lmp & get a non-rebreather mask & send the damn indicator (of the O2 flow) to the top (max delivery) or don't waste my m'er f'n time! The look in his eyes....I think I scared him bad! All my screaming, cursing, & thrashing. He DID do as I asked. He [& the Dr. at the time in the ER] got the jist FINALLY & I got some relief (well, the O2 maxed & something they dosed me with... Stadol, if I remember correctly). I was in the hospital for three days on DHE IV treatment just a few days after this incident. I think they "got it" & shared what they saw with my Neuro. Oh ya..... when this CH hit started..... on the way to the ER, when I finally realized it, Pops was running red lights getting me to the hospital! I told him to just get me there alive please, quit running red lights. I didn't need to be in an accident with a CH hit raging. Pops had never seen me hit with a 10. Scared the crap out of him. I think he thought I was dying, LITERALLY. YES! Hospitals & the health care industry as a whole need to be informed as to CH. Nice thread Chuck. |
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Title: Re: Hospitals need to be informed Post by Svenn on Jun 13th, 2004, 10:04am Thank you for this story Chuck. Just cant understand why those so called pro nurses cant ask their patients first whats wrong+++. Sad to say but your story is not RARE.It happens all over the world with us. It seems that its US that has to educate those that are working in the healthsystem,but it should be the other way around,at least in my eyes. A couple of years ago i did ask my GP what they learn about Clusterheadache in all those years at the medical University. Guess what he said About 4 hours he said. And thats the doc Just so it has been said.I trust my GP with my life.He is one hell of a doc"even if he is polish" :) All family use him Think all those of us that has "nightmare"stories like this regarding their cluster should tell us them. The very best from Svenn |
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Title: Re: Hospitals need to be informed Post by no-one on Jun 13th, 2004, 11:17am Chuck, You only had a small problem, that you couldn't make the drive? I would hate to see you have a big one. I would have loved to see that nurses face when you started in on her. I am only sorry I wasn't there to see your bottom hanging out LOL. Take care of yourself, PLEASE Hugs Becky |
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Title: Re: Hospitals need to be informed Post by miapet on Jun 13th, 2004, 11:21am hospitals are death traps . . .I'm sorry you had such a tard nurse, but glad you got things taken care of. I don't believe she was professional by any stretch of the means . . . give em hell . . *positive light and energy* mia |
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Title: Re: Hospitals need to be informed Post by Roxy on Jun 13th, 2004, 12:52pm Sorry you had to endure all of that BS Chuck. Hope the heart is well.....or at least better. I know when I was taken to the ER in CT. It took me, Cat and Lori Choyce an unbelievable amount of time to explain to the doctors and nurses about ch. My cardiologist was a quick study.....he just said, "tell me what you need....you'll have it." It was the floor nurse that gave me trouble. She told me I wasn't allowed to turn on the 02 myself. Of course.....like the good girl I am......I obeyed her wishes..... ;;D. ;;D For some reason when I asked for triptans.....they ignored me. T |
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Title: Re: Hospitals need to be informed Post by jonny on Jun 13th, 2004, 3:07pm Damn, last two times I was in the hospital the nurse gave me a happy ending. ..............................;;D |
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Title: Re: Hospitals need to be informed Post by Charlie on Jun 13th, 2004, 5:25pm Sadly, not an uncommon story. They tell me they hook you up to saline or something so you feel you have to be a good boy. After that, they treat you like an idiot and scream bloody murder if you don't play ball. Never been there when I had CH. I can imagine....Yikes. Our nurses are like everyone else. They are so frightened of deviating one iota from procedure that they make HUGE mistakes sometimes. Patients are stupid, whiners, know nothing about their own illnesses, are afraid of them, and sometimes only a "problem." They are terrified of admitting that they can screw up. Same for everyone today. I've had epilepsy for 45 years. In a strange way, I'm lucky when it comes to neurologists. I can spot a quack a mile away and threw one out of my room once and told him not to send me a bill. He didn't. He thought I'd fall for his "exploratory" brain surgery. Unreal quack. I've gone postal during a stay or two too. Don't beat yourself over the head. I wonder if it would be good to let the Nashville hospitals know that the town will be full of clusterheads? Carry something with you that says you have CH. Can't hurt. A homemade card might work Glad you're ok Chuck Charlie |
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Title: Re: Hospitals need to be informed Post by purpleydog on Jun 13th, 2004, 5:35pm In the past when I've been hospitalized, I made sure the doc knew where I was with my CH or migraines. If I needed treatment for either, it was there (man, I wish oxygen worked for me). Convincing the nurse was a different story. When my doc asked about the headache treatment, I was honest and let him know the nurses weren't co-operating too well. It was 24 hours after a major operation, and I was asking for pain meds. The nurses were asking me is it for your headache? Anyway, he let the nurses have it. They then retaliated by emptying my catheter bag and spilling it so I was laying in my own piss, and by not answering my call button. What idiots! Short of informing your doc and getting orders written for your meds when hospitalized, I don't know what else to do. If you come across as knowing too much about your condition and the drugs you use, they get suspicious. I don't know. You shouldn't have to educate the staff as to what the protocol is for CH. I actually had one nurse tell me that I couldn't be in that much pain. Sometimes I wish I could make these people feel the pain for one minute. >:( purpleydog |
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Title: Re: Hospitals need to be informed Post by jonny on Jun 13th, 2004, 5:39pm on 06/13/04 at 17:25:38, Charlie wrote:
jonnys card With holding 02 from me will get you and all around you killed in your own hospital, please be prepared to die if this happens,............ have a nice day ;;D ............................................jonny |
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Title: Re: Hospitals need to be informed Post by Elaine on Jun 13th, 2004, 5:58pm You can have your Doctor put orders in your folder at the hospital telling them what you need and how much, to fight your clusters. I had this done for me and find they do read it. I got to get it done again because I no longer use the hospital I use to before I moved. Its a good thing to check behind your doctor to make sure it has been added to your permenant hospital record. |
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Title: Re: Hospitals need to be informed Post by Kevin_M on Jun 13th, 2004, 6:14pm on 06/13/04 at 08:06:06, Lizzie2 wrote:
Right on the nose Lizzie! Kevin M |
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Title: Re: Hospitals need to be informed Post by Lizzie2 on Jun 13th, 2004, 6:40pm I've never had a problem regarding CH and hospitals, but this is because every one of my hospital stays in the last 3+ years has been related to headaches. However, I have had my fair share of extreme irritations due to the crap that happens inside those walls sometimes!! During my last inpatient stay, I was on an MAOI at the time, and the nurse kept trying to shove a pamelor (nortriptyline) down my throat. Well, that can cause a fatal interaction, so I kept telling her I couldn't have it, and she kept insisting that the doc wrote for it. Finally I convinced her that I knew what I was talking about. She was a new nurse, and I did speak with my other nurse who was supervising her about it. Sheeeeesh... I have had some issues with residents as well. 2 hospital stays ago, I had a picc line inserted that went up my neck instead of down to my heart. So, my doc ordered a central line put in because I didn't have any decent IV access. I waited for an entire day without meds waiting for the central line. The nurses were great about it and kept calling neurology. Finally, the resident came down and told me that I wasn't a priority and I would just have to wait for it. So I asked her if I could just go home and have the picc removed later. She told me that if I went home, they would send the police to my house to bring me back here because the picc was dangerous. I found out later how easy it would have been for her to simply take it out!! So then she decided she'd like to put an IV in my foot. She looked at my foot and said, "Oh this will be no problem at all." Heh... I TRIED to warn her! She jabbed at my foot for 5 minutes, and I finally screamed, "OUCH!" She said, "Guess it wasn't as easy as I thought." No shit, sherlock. I had seriously wanted to kick her in the face. I've got plenty of stories, but I guess it happens everywhere....you all know the drill. Really really frustrating sometimes... When you're already sick, you don't need that crap, too. Lizzie |
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Title: Re: Hospitals need to be informed Post by Little Deb on Jun 13th, 2004, 6:42pm Now hold on just a damn minute! We all know that hospitals, nurses, doctors, ER's can be a royal pain in the ass... But WTF???? Is no one going to chew Chuck's ass for not letting us know sooner about his ticker??????? Dammit Chuck! Did ya get your f'n meds yet??? Are you doing ANYTHING the damn doctor told you?? Taking ANY heart meds??? If you didn't have such a great story to tell about your ass hanging out, would ya have bothered to tell us at all???!!!!!! Chuck, I love ya, but dammit!!!! [smiley=hewey.gif] TAKE YOUR MEDS!!!! #$^&&*#%%$%$%^&*()&*))_#@$%@#@*)&*(%& ;;D [smiley=hug.gif]........Little Deb |
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Title: Re: Hospitals need to be informed Post by don on Jun 13th, 2004, 8:03pm Doesn't anybody use the treatment forms? The mere fact that we HAVE a form to present is an education in and of itself. http://www.headaches.org/professional/educationresources/PDF/physicianclustererform.pdf http://www.headaches.org/professional/educationresources/PDF/patientclustererform.pdf |
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Title: Re: Hospitals need to be informed Post by Rick_K on Jun 13th, 2004, 9:49pm on 06/13/04 at 20:03:56, don wrote:
The problem is getting them to read the fuckin' shit...........I like jonny's card |
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Title: Re: Hospitals need to be informed Post by Charlie on Jun 13th, 2004, 10:36pm Damn. How could I forget this stuff? I have no brain. The thing is; even if they don't pay much attention at first, this should make them do a double-take. Always use something. What's the worst that can happen? Charlie |
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Title: Re: Hospitals need to be informed Post by don on Jun 14th, 2004, 2:21pm The form will immediately validate the fact that you have a diagnosed condition and not just a bad headache. Also, following another Doctors orders relieves them of liability. They should have no problem with it. |
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Title: Re: Hospitals need to be informed Post by Donna H. on Jun 15th, 2004, 9:05am To start on the right foot, if you go in through the ER, be sure to inform the triage nurse and also give her the form don is talking about. Tell the triage nurse that the doc must see it. Tell to the ER doc to note it in your chart. If you are admitted, be sure to discuss it with your nurse. If you can't get anywhere with her, ask for the case manager or hospital administrator. This will get their attention. The Patients Bill of Rights is available (and must be presented to you at registration) at all hospitals and if mentioned, everyone listens. It is a legal issue and they're afraid of it because it involves the hospitals certification. |
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Title: Re: Hospitals need to be informed Post by BstnEagles on Jun 15th, 2004, 5:00pm That sux.... I especially when yo have to explain to doctors what Clusters are. They alwasys think migraine and the two are definetly not interchangable. |
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Title: Re: Hospitals need to be informed Post by ClusterChuck on Jun 15th, 2004, 8:52pm Let me give you a little clarification here. It was clearly in my records that I am a clusterhead, and that I am not to receive imitrex or nitro. The only effective treatment is O2 with a non-rebreather mask at a flow rate of 15 lpm. While I was down in the emergency room, I got what I needed, when I got hit. It was only after I got transfered to the regular room, and the nurse from hell took over that I had trouble. She either did not read that part of my chart, or she felt it was in error, because it went against what is the "norm" in administering O2. My thread was to show that we have to get the word out that we are NOT normal (some are more "not normal" than others, but that is another thread) in the administration of oxygen. Also, other nurses and doctors were VERY good in doing all that they could to help me in any way that they could. I do not want this thread to imply that all of them are idiots! I had some WONDERFUL nurses while there! They actually asked what I needed and what they could do, and when I told them, and then asked them to leave, they did, what I needed, and then left me to fight on my own, as I prefer. Chuck |
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