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Old 10-14-2005, 03:58 PM   #1
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Just when things seem stable, someone wants to rock the boat. Is this nurse right?

A rant follows so bail out now if you want. I called my dr. for my Oxycontin scripts last week and today-Friday- they still aren't here. I'm out of my Oxycodone for break-thru so I called to see if they had sent them. A new nurse coordinator for my dr. called me back. This is like the 3rd or 4th one of these I've had in the last 2 years.She says she's been looking at my chart and seeng that they are always sending out all this Oxycontin.I said yeah.I told her I've been on the same dose for quite a while and it, along with the break-thru was doing well enough. Then she starts sayig, well, I'm on too much that it was an extremly large dose -I take 50 mgs. of Oxycontin twice a day and Oxycodone for break-thru. I said from what I had read it wasn't that large and anyway my Dr. OK'd it.Then she says,you shouldn't even be driving while taking this!?! Where did this come from? I've never been told that, ever.I told her I've been taking this for a long time, it doesn't make me sleepy or groggy, and I'd never heard that before. Then she goes on to say, well, we're a liver clinic we're not really even qualified to be doseing pain meds.At this point I'm about to hang up on her and call someone else, but I didn't. I said that after my transplant they were very specific about having any presciptions and anything medical for that matter to go thru my transplant dr. This is a saftey precaution because when you have a transplant your immune system is compromised, so they want to know eveything about you, medically.

This went on for a while and after I told her about the pain specialist I've seen and, I think,had her understanding that this seemed to be the best treatment for me, according to everyone I've seen,she kind of backed off and said OK.It just pi--ed me off because at one point she said, you know you're addicted to this narcartic. I said, You make it sound like I'm abusing it just for fun. That's pretty insulting.I said if there is something else I can try to control my leg pain and get off Oxycontin, I'm all for it, but to this point I've not been told of anything. Whew!! I get a little testy when someone implies I'm using Oxy for reasos other than legitimate or that what I'm taking is too much. I know how my pain is, not them.

I probably came off as arogant to her, but that's too bad. I been on the same medicine for a long time and all of a sudden it's not right? Very aggravating.

 
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Old 10-14-2005, 09:49 PM   #2
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Re: Just when things seem stable, someone wants to rock the boat. Is this nurse right?

Hi:
I'm sitting here reading your post and I think I'm just as angry as you are about the way this nurse treated you. How dare she accuse you of being addicted to OC when she's never even met you!
If she had any questions about your meds, she should've talked to your doc, not you. It's really out of line for a nurse who doesn't even know you to give you a hard time about a med that you've taken for a while now.That's the problem with the medical field, too many so called professionals are not educated on chronic pain and narcotics. I'm glad that you came across arrogant to her and if I were you, I'd let the doc know exactly how you were treated and the aggravation she caused you.
Good luck with your transplant.

 
Old 10-14-2005, 11:35 PM   #3
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Re: Just when things seem stable, someone wants to rock the boat. Is this nurse right?

Sounds like she's[nurse] not to educated on treating pain.There really is no ceiling for dosage,its up to the doc.

 
Old 10-14-2005, 11:56 PM   #4
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Re: Just when things seem stable, someone wants to rock the boat. Is this nurse right?

That nurse had no right to even question your doctor's orders. Which is what she was doing. I dont like to stereotype so I wont (some nurses act as though they know better than your doctor what you need). I am just as angry at your nurse as you are. I would like to encourage you to call your doctor and let him/her know about the conversation. I had similar experiences in my pain clinic. I did not tell the doctor for the longest time what was being said in the examining room by the nurse when he (doctor) wasnt present. I had a nurse continuously tell me not to take all my medicine after the doctor wrote the presecriptions and left the room. Early on in my treatment my pain was out of control and I didnt know any better that I listened to this creep (nurse). I even quit taking my meds cold turkey because the nurse convinced me that I was going to be a drug addict if I continued on the meds. When I finally had the nerve to tell the doctor what the nurse was saying to me my doctor was extremely upset. He apologized profusely to me and explained the whole pain management philosophy and how his nurse was out of line and misinformed. The next doctor visit....Mr. know-it-all nurse had been fired. Apparently I wasnt the only patient the nurse was treating this way. My doctor explained that this nurse was actually compromising his treatment plans with several patients. Please let your doctor or clinic know. Maybe knew nursey needs some supplemental education or clinic/doctor needs to know that she disagrees with their treatment plans. You may not be the only patient she has treated this way. Good Luck to you. I totally understand and respect how upsetting your experience was. MizLiz

 
Old 10-15-2005, 12:45 AM   #5
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Re: Just when things seem stable, someone wants to rock the boat. Is this nurse right?

I thank you all for your encouraging posts.I thought about it awhile (actually, it's been on my mind all day) and I think maybe this nurse, being new, is just inexperienced or unfamilar with pain management.I've found this is often the case n the medical field with people who are unfamilar with cronic pain.The dentist I used to go to thought I was crazy for taking Oxycontin.He went on to tell me about the news stories he'd read about the misuse and addiction problems with Oxy. I was amazed an educated professional would be so guilable to confuse those things with legimate pain treatment, but he did. As for this new nurse, I will inform my doctor just because I don't want someone else pushed around.I think I made it clear to her that until my doctor says otherwise,I would appreciate getting my scripts. But it was just unexpected, I've never had one of the nurses do that before. I think one thing that is happening is that IU med center in Indianpolis, where I go, the transplant program is really growing fast, they do an amzing number of transplants, and since I'm 4 years out now, and in pretty good health other than the cronic leg pain, I'm getting the newer nurse's because they want the more experienced ones with the newer transplant paitients.Which is fine, but I'd still like to be in there somewhere.

Again thanks everyone.

 
Old 10-15-2005, 01:33 AM   #6
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Re: Just when things seem stable, someone wants to rock the boat. Is this nurse right?

Here are 2 wonderful joint statements made by health care professionals to help educate the public and other health care providers about the need for balanced information about the legitimate use of opioid medications including oxycotin, not only the potential abuses.

Maybe these two articles would be helpful to your clinic and doctors.

http://www.deadiversion.usdoj.gov/pubs/pressrel/newsrel_102301.pdf

http://www.deadiversion.usdoj.gov/pubs/pressrel/painrelief.pdf

MizLiz

 
Old 10-15-2005, 01:38 AM   #7
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Re: Just when things seem stable, someone wants to rock the boat. Is this nurse right

Hi wfc33. Sorry to hear about your experience with the inexperienced nurse. Most of them will never have any clue of what its like to have to put up with this type of medication, much less be treated as you were on top of it.

Just curious, what type of leg pain do you have? Is it nerve pain? If so, what kinds of things do you do to help relieve it. I also have nerve pain that runs down my leg, and into my foot. Its a constant throbbing, the pain never really subsides. I just wanted to know if you had any type of non-medication treatment that you've had success with.

thanks.

 
Old 10-15-2005, 06:17 AM   #8
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Re: Just when things seem stable, someone wants to rock the boat. Is this nurse right?

I know what its like when you are on meds at are workiing and you don't get them in time. Last month i went 2 days without and this month again i will be without for 2. but that is postly w/c fault for not approving to pay my meds and The first month I paid for them myself and the pharmacy was 6 pills short but I took them anyway. then the next month I had to start mailing the to a injured worker pharmacy in MA. well with the turn around time and the date of my last prescription I was out for 2 days by the time I got them. This month because of the date again I'm out on monday and they aren't shipping them intil monday. So I will be without again, all becasue the one month the pharmacy was 6 pills short and I accepted them unstead of driving to another pharmacy. And as far as the driving I was on oxicontin 60mg and percocet for break thru and I wouldn't drive. I tried once with my 14 year old and I almost had at least 2 wreacks and he told me to pull over and let him drive before we kill someone. now I take neurontin also and that stuff makes my memory like very short term. If I am responding to a post and it takes to long I forget what I was even answering and have to say sorry I forgot what I am even talking about and end the post. Sometimes I feel like i'm looking out of my body watching every thing going on. My fiance gets very upset with me because he works all day and when he gets home I drive him nuts repeating everything over and over again. He ends up nicely telling me to go back to bed and let him unwind in peace. He knows when I have just taken my meds because he says I get loopy. So if I were to drive I fear I would end up killing someone or myself. Hell I sometiimes go to check the mail and worry I will forget what i'm doing. I hope you don't have any more problems with your prescriptions with this nurse.

Terri

 
Old 10-15-2005, 07:06 AM   #9
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Re: Just when things seem stable, someone wants to rock the boat. Is this nurse right?

Hey W.The 'fun' of living with someone elses liver.i have been managing my sons care since his liver decided to fail and he recieved that wonderful wonderful gift of a new life.It was just six years on june 7th.you know,just because of the transplant itself(don't know if you have any other medical issues)you really don't have to worry a whole lot about taking meds other than the erythromycin(?) group of anti bs and of course,the grapefruit thing.we get all of my sons tx meds thru the u of m where he had his Tx done but all of his other meds,we get thru the local walgreens.if I were you,honestly, I would go thru a good pain clinic instead of totally relying on your transplant center for your pain control.As the nurse(who i really think is just really unexperienced and rather ignorant,like most people,even in the medical prof)told you, they don't normally do pain control like yours.you also would not have the problem of not having your meds when you really need to have them in most cases.I was relying on my neurosurgeon for my pain control for the first few months after my surgery(this was also done at the same university hosp that my sons Tx was actually done)but i kept having to deal with the same crap that you are with regard to not getting my Rxes in the mail on time.They were just way too busy,really, to be able to stay on top of things and actually get them mailed on time.Being that the Tx center really doesn't fully understand just what you are dealing with here as far as having to HAVE those meds absolutely on a certain date,i really do think that the PM clinic would be a much better option.Pain control thru a tx center really is not their 'main priority" you know what I mean?my sons Tx center is wonderful about staying on top of his labs and calling me if a number or two is even slightly off, but after his discharge post Tx,they were not the best as far as actually getting the pain control med Rx filled,as opposed to his actual Tx med Rxs filled which were always on time no matter what,cuz those have to be,you know what I mean?i guess what I am really trying to say here basically is that your pain is not THEIR priority,your transplant is.A PM clinic is actually set up to ensure continuity of your pain meds,you know?Only because your pain IS THEIR priority,not your Tx.i really do think that seeing an actual PM for your pain control really would not pose any sort of risks to you as far as the Tx,really.as long as they both are aware of what each other is doing and just asking the pharm if you have any sort of doubts about anything you are taking you would be just fine.Believe me, with all that my son has had to deal with during these past seven years,starting with the presentation of his liver failure and all of the other crap on top of that,if I thought for one minute that his care was being compromised by the way we have his meds filled both Tx and non Tx,I would do everything thru just his one doc at the Tx center,in a heartbeat.but honestly,there are no major risks here anymore or less than any other non Tx patient when it comes to meds.I just think that you would get much better pain care plus other possible therepys that you cannot get thru your Tx center,and the most important,getting your meds when you actually need them and not have to deal with new and inexperienced nurses who happen to show up at your Tx center.just a suggestion for you to try and keep the hassle to a minumum.hope things work out better for you W.marcia
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Old 10-15-2005, 01:23 PM   #10
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Re: Just when things seem stable, someone wants to rock the boat. Is this nurse right?

More bad crap, it just doesn't end.So I got my scripts in the mail today. I check them over and everything looks good.They were written by the new nurse, I'm sure, because my last one had very neat handwriting and this one was very dfferent. Probably why I missed the mistake. But I think thet're ok and relax a bit, head to Wal-mart to get it filled and thinking I'm OK for a little while.(Just a note; she said she mailed them Monday, but the postmark says Oct. 14.What the hell!?!) Anyway, I get to WM & drop off the script and go to get a few groceries while it's getting filled. I come back and the pharmacist says to me, the way it was written she could only give me half the pills.She wrote it as one every 8 hours instead of 1 every 4 hours as it should be. I didn't see it because I wasn't looking at that, only looked and he quanity.I suppose I could have waited till Monday to try to fix it, but the pharmacist already had it filled and I am out so I took it.But now I'm screwed because I doubt if they can fill another for me this month and if I wait til next month, I can't fill it til the third and besides I don't really want my pain meds to be my spendown meds. Not to mention even if I can fix it for this month, there's another co-pay I have to make. By the end of the month, I'm really, really, broke. I'm sure none of this will matter to them. I'm so mad right now, I want to punch something. It's always something.I'm tired of everything being wrong.

Amsterdam, about the leg pain, mine is from nerve damage.When I was sick before my transplant, my legs swelled up badly, they were so tight I could barely pull my jeans over them.This happened several times over the course of 5 or 6 months and when it happens that pressure on the nevres causes damage.I tried many things, streching, walking (although, walking just makes t worse, so I do't do that much) I tried OTC stuff like Absorbsine Jr,Thera-Gesic, etc.One thing I can do, although not as much as I'd like, is bike ride. It doesn't hurt as much as walking. Only thing I can figure is that with walking there is that pressure when your foot hits the ground,that isn't as bad with biking.

To the mom with the son & liver transplant (sorry, forgot your handle) My liver has been a great success. Into year 4 and no problems at all. That's the ironic thing: before my transplant I thought there was 2 possible outcomes: either I die waiting or I get the transplant and maybe get back to normal life. But I don't know, maybe because I was one the waiting list for longer than they wanted (shortage of organs at the time) and during that time I was really sick, down to 95 lbs (I'm 6'1"), they said I was really close, like a week from dying, all that took it's toll on my body.So now the new liver's great,I'm almost never sick, feel pretty good, except that I have this pain in my legs.I have some other aches and pains, but I just chalk that up to getting older As for meds, I take both Prograf and Cellcept and I'm taking Neurontin, which helps the burning in the leg muscles, and a couple of others. It looks like a lot of pills in the morning ( my nephew gets those bugs eyes when he sees what I have to take0 but it's really not bad.And those meds are so much easier to fill because they can call those in, unlike the pain meds which all need a written script.Hope the best for your kid.It's a hard thing for an adult to go through,I can't imagine how hard it is for a child. Good Luck.

I didn't mean to go on so long, sorry :>

 
Old 10-15-2005, 01:39 PM   #11
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Re: Just when things seem stable, someone wants to rock the boat. Is this nurse right?

Oh I am so sorry for what you are going through. I hope this nurse did not do this on purpose. Like if she decided on her own that you didn't need as much. Especially since she already expressed her opinion about the amount of meds you are prescribed. I cant believe the gall she has. Oh please call the doctor on Monday and explain how much she has cost you in emotional turmoil as well as money. Hopefully your doctor can help to remedy the situation for you. My personal opinion is that this nurse should have to make your next copay when and IF the doctor is willing to write another script to make up for the missing meds. What ever support you need from us just let us know. I understand how frustrating this is but you have to keep on them about this. It is not right. Take care of yourself and let us know. MizLiz

 
Old 10-16-2005, 06:37 AM   #12
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Re: Just when things seem stable, someone wants to rock the boat. Is this nurse right?

Hey w,thanks for the kind words.yes the amount of meds my son is on would also pop most folks eyes outta their heads as well.are the two meds you mentioned the only ones you are currently on for tx?Gosh my son is also taking prograf and was on the cellcept at first and that was eventually dropped.But he also has to take,pred,ursodial,protonix,and mag ox 400.He also is taking depakote(i am aware of the possible problems with it regarding possible liver probs,but this was okayed by his gI and tx surgeo and the Tx co ordinator and he also has his labs done once a month)so we are okay with that.he just recently started seroquel as well.we have one of those industrial strength med trays as alot of these meds he has to take a few times a day.Can you believe that right now,there are actually Tx patients(liver) who are only having to take 1 prograf per DAY,and still are able to maintain anti rejection status??This is the only pill they are taking,thats it.i was just shocked really.i wish my son could get down to that as the meds,while they are keeping him alive,are also damaging his kidneys that are already polycystic and it does not do any big favors for the actual Txed liver either.rather ironic don't you think?you take the flippin meds to save your liver but at the same time,it is getting a good hit from the anti Rs themselves.But so far so good.it just truely amazes me that we still have him.How someone can go 9literally)at deaths door to a normal healthy person with a new organ.I really still am awed at this whole process.I will be eventually needing a new kidney at some point in time,things are not going well with all of the cystic development going on in my kidneys,espescially my L.the biggest problem with me is that PKD is an inherited condition and so that makes a very big part of my immediate family ineligable to even attempt a donation.This is also on top of all the other crap from my sp cord injuries that I am dealing with.God,ain't life grand??

I really DO think,w,that you really really do need to seek out an actual pain doc for your Rxes,honestly,like i mentioned before,your Tx center just does not understand the immediate need for your meds.they are there for your liver Tx issues mostly and any pain control is always going to be seconadry so it will continue to be treated as such.at least with a good pain doc,their priority IS your pain and they take many steps to ensure that the continuity and correct dosages are ALWAYS maintained.if i were you,i really would start making some phone calls or at least get a referral from either your primary or the Tx center,They just are not taking your pain as seriously as they should.You DO deserve better treatment than what you are getting right now.please check into this.i realistically cannot see this situation actually getting any better for you really.why continue this ongoing nightmare if you don't have to.honestly,there really is not any sort of risks for you by doing this as long as everyone knows what is going on and you obtain all of your meds at one pharm.hope you don't have any sort of major problems with getting the rest of your meds at the end of the month.Good luck W,Marcia

 
Old 11-02-2010, 09:53 AM   #13
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Re: Just when things seem stable, someone wants to rock the boat. Is this nurse right

I had a similar thing happen to me but not to that extreme. I get 120 pills regularly but my doc wanted me to go an extra week longer due to his vacation. He wrote the Rx for 150, but my health plan only pays for 120 of something unless some form is on file, it's not for me. So, I call the doc and tell them that I only got 120 and the pharmacy will verify everything. I don't think they actually checked but they made it work for me and I got the refills when I needed them. It was a worrisome time though. In your case, I would go to the doc and show them the bottle and explain what the problem was. I can't believe with all that in the their face, they won't "make it right" for you. Good Luck!
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