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Old 10-29-2007, 12:00 PM   #1
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WE need a patient ADVOCATE do you agree ?

I think pm patients need an advocate to help us get the pain relief we need and for the most part arent getting,It would be someone with the patients best interest as there motivation.They would talk to DR,s an maybe DEA to allow us the meds we need.

Last edited by HBMod07; 10-29-2007 at 12:50 PM. Reason: removed questionnaire

 
Old 10-29-2007, 02:54 PM   #2
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Re: WE need a patient ADVOCATE do you agree ?

I had a very positive experience along these lines.

I was hospitalized for a bowel obstruction a few years ago. At the time I was using the Duragesic patches and the fentanyl lollipops for BT pain. They had an impossible time getting my pain under control in the ER and finally consulted my pain doc, who convinced them of the dose required to work.

When I was admitted and got to my room there were orders to set up a PCA with an appropriate fentanyl dose. My floor nurse decided this dose was "profane" and even used that wording to me and my family. I went ballistic. I can't recall who mentioned it to me, but someone told me that there were two staff members who were patient advocates and one with a specialty in pain management. Suffice it to say they got everything worked out to the point where the nurse supervisor visited me and asked what I thought they should do with the "problem nurse." This was right around the time that hospitals were implementing the JAHCO guidelines calling for pain assessment to be the sixth vital sign when evaluating patients.

I was amazed at the compassion and care shown by these patient advocates. We definitely need more folks like these.

steve

 
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Old 10-29-2007, 04:27 PM   #3
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Re: WE need a patient ADVOCATE do you agree ?

Hello Everyone,

Many of you remember that I (Conductor) was recently in the hospital due to a fall that occurred on June 1, 2007. I endured a right basilary skull fracture. We don't know if I had a bleed that caused me to fall and crack my skull or if I fell and landed on my head, which caused the bleed.

Part of the medical difficulty was that I was taking Coumadin due to my Lupus Anticoagulant diagnosis.

THE PAIN PROBLEMS?? If I did not have my Mom there to help me, I cannot imagine the withdrawal types of problems I would have gone through. Normally, I use the Duragesic (Sandoz generic) Patch 75 mcg that I change every two days. As well, I use Actiq 800 mcg (2-3 per day) and Dilaudid 8 mg (up to 5 per day). My Mom came very, very close (and I'm not joking on this one) to grabbing the physician by his lapels to make sure I had some form of fentanyl going into my system! So, I was so graciously allowed (back to sarcasm) 1 (one) 25 mcg fentanyl patch every 3 days. I was not allowed any Actiq or any Dilaudid. For BT pain, I was allowed 1 (one) Percocet every 4 - 6 hours. Certainly, I was in the hospital for serious reasons, but just telling my parents that the hospital staff needs to "make sure he's alive" didn't particularly cut it in my opinion. They didn't want to render me unconscious--that was their comment. The other physicians with whom I've since followed-up did not understand that complete lack of adequate care for the Pain problems.

Some people might disagree with me, but severe pain being caused by lack of appropriate medication (that I've been on for almost 10 years) doesn't seem right. Going from the fentanyl patch 75 mcg every 2 days, Actiq 800 mcg (2 - 3 per day), and Dilaudid 8 mg (up to 5 per day) for Pain Management down to the fentanyl patch 25 mcg (from 75 mcg) every 2 days and 1 Percocet every 4 - 6 hours for BT pain does not help the situation!

I don't know what kind of things would have happened if I had not had my Mom available. (My Father was in Michigan at the time of my fall. As soon as he was informed, he drove back home!) My Mom was my advocate--and she could only do a little bit! The most unfortunate aspect was that I was transferred to a hospital in another county--a place where my Internal Medicine doctor does not have privileges. She didn't have a voice there!

While it does me little good, I still get furious about this situation. I believe we need advocates, but I don't know how effective they could be for us in these types of situations. Maybe others will have better ideas than I do!

Sincerely,
Jon (Conductor)

P.S. Steve, I get seriously IRKED when nurses--or anyone else who doesn't know your situation--make comments about you dosage levels. Because I have taken these medications for such a long period of time...I need higher doses of most opiates. I underand why you would be irritated with that nurse who made the comment about your "profane" fentanyl dose!

 
Old 10-29-2007, 05:50 PM   #4
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Re: WE need a patient ADVOCATE do you agree ?

I agree, I was in the ER, and we were waiting and looking around the room and there was a sign with a number to call if we wanted a patient advocate. My husband said we'd call if they gave us any problem. They didn't. So far I have been blessed with my admissions to the hospital (7 in the last 18 months), that I've been admitted with adequate pain control. Only once did I have a nurse who had a problem with it.

I wish I could take one (an advocate)with me every time I go to the doc or hospital. If something would happen to me and my husband wasn't available, I'm up that well known tributary without a paddle!

Melissa

 
Old 10-29-2007, 06:23 PM   #5
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Re: WE need a patient ADVOCATE do you agree ?

Hi All,

I know all too well about this. I've had over 65+ surgeries for my kidneys, including the removal of my left kidney almost 2 yrs. ago. My kidneys, or should I say kidney, is the reason I'm in PM. It's soooo horrible when I go in for surgery, although I will not be having anymore surgeries because my remaining kidney is dysfunctional/failing and I will not go on dialysis.

Anyway, Boxerluver already knows this story from the kidney board, but when I had this one surgery done 5 yrs. ago, it was a nightmare!! I was on Oxycontin 40mg bid & Actiq 800mcg 6/day prn (averaging 5/day). Anyway, the SOB surgeon assurred me I would be taken care of by the PM team at the hospital. WRONG!! I wake up in recovery screaming my head off!! The nurse had already given me 50mg of Demerol IV and said "she should be out already". Are you kidding me???

Well, I'm screaming in pain, my mother and husband are yelling at the docs and nurses and the nurses are yelling at the docs. My b/p was 250/130 and climbing. The ahole nurse comes over and says "why are you still in pain?? I don't understand"? I told her to look at my med chart and she did and came back and said "ohhh, you poor thing, you are an addict"! WHAAATTTT!!!

This is something you should never say to a post-op patient screaming in pain with stroke level b/p and rising! She shouldn't have said it period! It took 30 minutes before the PM team came in and hooked up my PCA pump (seemed like an eternity). It took 15mg of Dilaudid spread out in 5mg doses over 30 minutes just to take the edge off. I was still miserable! Eventually, the Dilaudid was changed to Fentanyl.

It was a week in the hospital I will never forgot! I was still in severe pain, but they would not increase the Fentanyl anymore due to "my possible breathing stopping". Give me a break!! Someone who is wide awake with still very high b/p, 100% oxygen saturation, and a pulse of 130 is not going to stop breathing on you!

Well, needless to say, this is one mistake I've never made again. Believing the surgeon has set up my post-op PM. I make it a point to have already a plan in writing!! This horrid experience was partly my fault, but, it will never happen again! Take care and bye for now!!

 
Old 10-29-2007, 08:51 PM   #6
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Re: WE need a patient ADVOCATE do you agree ?

Hi all--I also went through the NIGHTMARE and had the NURSE FROM HELL to take care of me fourteen months ago. I had a double fusion with instrumentation(screws, two cages, rods etc.) and I had already been on pain meds for 10 years from chronic pain and not to mention 18 other surgeries. (not for the back). Anyway, after my back surgery I had a nurse that took it upon herself to lecture me because I was in such pain and I wasn't getting the relief I needed. I could not believe it. And the Drs. WERE
COMPLETLEY cluless. What does a person do in a situation like this? They sent me home without the right amount of pain meds. And I live 260 miles from the hospital. I felt so sorry for my mother and husband. They didn't know what to do.(It was a TRIPP FROM HELL) When we finially GOT HOME I TOOK THE PAIN MEDS I HAD A T HOME. And I went to bed and slept for the first time since the surgery.(four days without sleep)). Well, this was fourteen months ago and I am in worse pain than ever. But I will not go through another surgery(even if all my hardware is falling apart!) I have : degenerative disc disease, oeteoarthritis, fibromyalgia, R.A. AND OSTOPOROSIS. I suffer from adrenal fatigue from all the pain. I will never go into another hospital without an advocate!! It IS SCAREY enough WITHOUT BEING TREATED LIKE A SECOND CLASS CITIZEN!! Do all hospitals have advocates if we need them? One nurse said I was going to end up on the steets like a hard core druggy. I cryed. I am a 55 year old woman. She should have been turned in. Anyway, I understand you all. And I think things need to change fast. God Bless You ALL! BOOMER

 
Old 10-30-2007, 07:12 AM   #7
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Re: WE need a patient ADVOCATE do you agree ?

I have to say im not surprised by the responses because i too have had the meds i need NOT given to me.

This not only a hospital problem but DR. and PM , im trying to figure out how an ADVOCATE help us with the horrible situation we are in.But i dont know the answer. Im hoping to find one tho

I too spent 4 hrs in the Eroom recently crying my eyes out w/ pain bp 210/130

how hard can it be to see the pain in a pateint?

plz keep posting folks

 
Old 10-31-2007, 04:07 PM   #8
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Re: WE need a patient ADVOCATE do you agree ?

I had a nightmare experience and spent 4 days in the hospital post-op screaming, crying, begging, and NEVER sleeping! The nurses labled me an addict because "the doses should be helping me, they would put anyone else in a coma"! I have never suffered like that, and even consulted an attorney to sue for pain and suffering. I now still have cp, and fibromyalgia, that I am convinced was triggered by this horrible experience.

You have to educate yourself as much as possible. Have a back-up plan, talk to everyone....surgeon, anestiesiologist, and pain doctor. Make sure all of these poeple are aware that you WILL not tolerate that type of pain and suffering. All hospitals have a patient advocate. I would call them in a heart beat. While you are admitted, it is the anesthiesiologists job to cover pain control. If the nurse or doctor will not help, demand that they page the anesthiesiologist immediately.

Bottom line, YOU are your best advocate.

 
Old 10-31-2007, 07:10 PM   #9
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Re: WE need a patient ADVOCATE do you agree ?

Many do not realize just how many pain fakers there are out there. I can tell you that you will probably underestimate the number by a large margin.

Those fakers manipulate their MD''s well, and get those doses....noone has ever called them out on it. So, they remain a problem. It's a shame that we have to suffer in many more ways than one b/c of the fakers. Gosh, there are just so many of them out there, I just can't even verbalize it.

Sorry to hear that you have not had understanding nurses. But , there are some very compassionate nurses out there, and they are willing to be your Advocate. Make it a routine to discuss this with them ....in a more knowledge-type of way.... with them. I can tell you that fakers try and smooth over the nurses with lots of emotion and flattery. So, if you talk in a more knowledge-base way, that is, about your drug history and how it hass increased over so many years, things might go better for everyone involved. Again, it's the fakers out there that have made us do this....let's be angry at them.

In a more joking way.....What we should do is find a way to communicate that we are not one of those fakers. I wish there was a signal we could all give...like a wink or something. That would make all of this unneccessary doubting, hostility, and embarrassment go away.

I hate when ANYONE doubts me, let alone my caretaker.
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C4-C7 Herniations
T5-T10 Herniations
L3-S1 Herniations
Thoracic Fusion via Thoracotomy 10/06

Last edited by babs17; 10-31-2007 at 07:12 PM.

 
Old 11-01-2007, 05:40 PM   #10
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Re: WE need a patient ADVOCATE do you agree ?

I just don't know how to deal with nurses anymore. My pain problems and surgeries started when I was 9 yrs. old, now 36. Obviously, as a child, my parents were my advocate. As an adult, I just can't make any head way. I've never hidden anything from any doc or RN that has ever treated me....all the way from office appts., surgery, and ER. In the ER, for example, I always carry a small amount of my meds and any contact info they might need, doc's ph. numbers, pharmacy ph. number, etc. I also carry my 5" thick surgical notebook with me. No joke, it's actually that thick. I've had over 65+ surgeries.

I don't know if it's because I've basically "grown up" in the med field, but I'm quite knowledgable with urology/nephrology (my kidneys, or should I say kidney is the source of my pain and surgeries...I had my left kidney removed almost 2 yrs. ago). I've had over 400+ kidney stones. We stopped counting several yrs. ago, so who knows by now. Anyway, I'm also very familiar with all types of pain meds and anesthesia, as you can imagine.

I've tried talking to them on "their level" and it seems to **** them off even more!! They say "I know too much". Duh??? What do you expect from 27 yrs. of docs, surgeries, and pain. I can't deny what I've been through and neither should they. They would rather label me an addict because they have never seen anybody like me, and never will. All of my docs are amazed at my history (primary care doc, PM doc, research docs, surgeons) they just don't believe me until they see for themselves. Obviously, they do now. Also, it's not hard to see all the huge scars all over my body from surgeries.


I have everything they need for verification, but still, 98% of the time, I'm treated badly. They say "no one person can have THAT much pain and problems"! I'm left in tears with stroke level b/p. My b/p is always high, even with 4 different cardiac drugs and my resting heart rate is 120. It can easily jack up to 180....not fun.

I can't take the "abuse" anymore from the ER, so I don't go anymore. I'd rather die, literally, than go there. The last time I went was for b/p and by ambulance...not my choice. If I had been home by myself, I would not have called the EMT's. My husband did. He thought I was having a massive hemmoraghic stroke. My b/p was 250/140. The stress of even thinking about the ER makes my blood boil. As you know, high unstable b/p is bad enough on it's own, let alone with only one kidney that is not exactly in perfect shape, either.

I'm just curious why the med profession does that with someone with such an extensive history?? I understand all the crap you see day in and day out (fakers). I just don't get it with someone like me, and everbody else, that is truly sick and in pain.


Is it just a "blanket policy" to treat anyone on long term pain meds as an addict?? Sorry for such a long post. Take care and bye for now!!

Last edited by friendly_one; 11-02-2007 at 01:36 PM. Reason: read the rules and don't ask others to break them.

 
Old 11-02-2007, 09:50 AM   #11
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Re: WE need a patient ADVOCATE do you agree ?

I have had WONDERFUL nurses, don't get me wrong. The percentage was for the ER nurses and a few PACU nurses. As you can imagine, my tolerance for pain meds is very, very high. I've been in PM for almost 7 yrs. now. So, that's Class 2 meds everyday, for 7 yrs. and everything else for the first 20 yrs. after a surgery and during a renal colic attack.

Believe me, I've seen first hand how some (and probably most) nurses are treated by some docs. I've definitely seen how nasty, very nasty, some patients can be. I'm a very compliant patient and easy going. Of course, I get frustrated, but instead of laying into the med profession, I keep it bottled up inside until I have a break down.

It's more of the ER where I get treated so badly. Many, many times the nurses and docs will say "just because your drugs come in plastic bottles instead of plastic bags doesn't make you ANY DIFFERENT than the heroin junkie on the street"! I can usually tell just by how they enter the room how I'm going to be treated. I know I make them extremely nervous with the amount of meds I'm on and then the amount ordered to give me by my PM doc. I've had many nurses refuse to give me the injections in the ER and the doc actually had to do it because nobody else would.

Looking back on my childhood, I really can't remember having a bad experience (other than surgeries..that's enough of a bad experience, in itself) with the med profession. It was only after I got older. My PM doc told me it's because children aren't drug seeking. He said, it's not that I am, it's just how chronic pain patients are treated.


Anyway, I believe it's the whole long term narcotics that make the med profession act the way they do. They have NO CLUE what we deal with everyday, 24 hrs. a day, like you said. If they would just have to live 1 day in our shoes, the majority would probably be dead by their own hand.

Ok.....I'm sooooo sorry for these long posts. In a way, I feel better just to get this off my chest, ya know??

Last edited by Administrator; 11-02-2007 at 02:39 PM.

 
Old 11-02-2007, 04:35 PM   #12
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Re: WE need a patient ADVOCATE do you agree ?

Friendly I can so relate. I was having a bronchcoscopy and my pulmonologist thought my cancer had metasticized(it hadn't, it was sarc) so he had all his med students there to "see" what that looked like.(I'm sure they were disappointed but as I was asleep, I couldn't tell .) He was in a hurry and the nurse anesthitist(sp?) wasn't there so he started early and told the med students to "push" the fentanyl. Well that's what my CP meds are so of course the dose to put a "normal" person out, didn't even phase me. As they kept giving me more, they got very nervous until the Doc took it and gave me the whole 200mcg(and that was through IV). I laughed when my hubby told me what happened.(The doc let him stay and watch the bronch.) My pulmonologist is really cool.

They all should have to be better trained on dealing with patients on pain meds.

Melissa

 
Old 11-03-2007, 12:13 AM   #13
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Re: WE need a patient ADVOCATE do you agree ?

Hello to everyone on this thread:

It's late, and I'm sorry to subject you to my rambling. So, I'll try to keep it brief.

When it comes to going to the ER, I would think most of us--not all, but most--would go to the ER of the hospital where our doctors have privileges. At the very least, the ER doctor can contact the physician with relative ease even though they make it appear as if this is way too much of an imposition placed upon them. Therefore, our history could be given to an ER doc with relative ease over the phone--especially if you've known the doctor for a great deal of time.

Can anyone help me S C R E A M? No matter what, this forum seems to come back to the same episode of complete frutstration. You know, it's the one where I can no longer contain my rage. We seem to continually ram our heads into that same rock of pain. I'm sure there are some members who could offer advice at this time. How can we handle this in the quickest, cleanest manner?

Not to be harsh to anyone's feelings...but, my pain should have no influence on the treatment of someone else's pain. If I am the 4th patient out of 4, and the 1st 3 patients had "clear" signs of addiction (i.e., drug-seeking behavior), why shouldn't I be evaluated with equivalent and appropriately objective tests? I AM NOT AMUSED. Oh...Did I not mention that I never claimed this would be simple?

The lateness of the hour, and the fact that my brain is shot...I'm not thinking straight!!

The worst thing I hear about in an ER is something that usually comes from a Triage Nurse. When it becomes clear that I probably need pain medication (added to the fact that I have Systemic Lupus), the Nurse usually will make a MORONIC statement. Something like: "Oh, that [Lupus] is Dr. Joe Blow's specialty!!" Even those who claim their specialty is Lupus treatment (like a rheumatologist) should make a patient scratch his/her head in disbelief.

WHY??

Anyone who treats this disease could not possibly make their living on the small portion of the population who have it. So, if this is a physician's particular sector of specialty...I truly wonder what good it does the doctor?

It's at this point that you either have to really dig in your heels for a "fight"--which usually gets you nowhere--or receive sub-therapeutic treatment. Either of these options really stinks.

That's it for now, my friends. The management of Chronic Pain--for whatever reason--is becoming straining and draining on an emotional level because of this constant fighting required of us. IRK.

Thank you,
Jon (Conductor)

P.S. I am--again--so utterly thankful that my Internal Medicine Physician follows my Pain Management problems. She realizes the problems involved in our locality.

Last edited by conductor; 11-03-2007 at 12:15 AM. Reason: Fix grammar/spelling...Not all, I'm sure. JNS

 
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