How do you get DR and nurses to recognize limits on arm use?

Sheila, He insisted on taking your blood pressure on your arm, despite your refusal?

I had a colonoscopy consult a few months ago, and also didn't feel listened to--but am going ahead, reluctantly with the procedure, and will wear the "g-sleeve" and wraps and flatly refuse any blood pressure/IV in that arm.

I'm really concerned about his insistence on denying your precautions.

I would send him the NLN position paper on risk reductions, and maybe the SUSO link on info for health care providers: http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

And, I think you should call and discuss with the doctor what will be done to respect your need to avoid LE triggers during the colonoscopy--or come armed with info to the pre-op and make your boundaries clear.

If this physician is not receptive, there are others.

Why is this so hard???

I pushed mine back to April, and will be asking advice before...

Kira

P.S. No wonder your blood pressure was high. 

Sheila, I'm so sorry! They're always so baffled why people don't just line up for colonoscopies, and then when you show up they do this to you! Aaaaaugh!

I always have to be anesthetized because I can't handle the "twilight" drugs, so I talk to the anesthetist and insist HE put the IV in, not some willing but inexperienced nurse. (Note: if you're anticipating a foot IV, call ahead and tell them they need to have some lidocaine on hand, because at my endoscopy center they don't normally keep it there and it took a long time to get. It's not essential, obviously, but my anesthesiologist kindly insisted -- and why should we suffer needlessly?!)

Last time I wrapped both arms, but there's no guarantee they won't remove the wraps while you're out, so I also wrote in on my arms (No BP, No IV, Restricted Extremity). Over the wraps I wore the large-size G-Sleeves. Check-in was an adventure, as the check-in people took one look at me and were dripping with pity -- not exactly the attitude you want going into this! They fiddled for a long time trying to come up with a way to get the ID over the wrap and ended up doubling it to fit (next time it goes on the ankle!) For my truncal LE I wore a zipper-front Solaris compression vest, so they could get to my chest but didn't have to remove the garment.

I had lots of written material about LE to hand out to everyone I met. Jobst makes a good booklet for professionals, and they'll send it to you free, and/or use the StepUp pages and the NLN Position Paper. And I yammered away at all of them to make sure everybody knew my arms were off limits. For me, the clue is not to ASK, but to overwhelm them with information about why they are not going to use my arms, period. When I'd hand them written material I'd say, "Have you seen the latest lymphedema research news? Lots going on in the field!" Like a cheer leader. (I know: bizarro! Hello?! I've just spent 24 hours on a toilet seat guzzling jello and I have to teach YOU this stuff?!!!)

What can I say? It worked fine. And as I left, the nurses at the station were all reading Jobst booklets. So the next lympher who comes along will hopefully have smooth sailing.

Home and recuperated, I sent a letter off to the hospital naming names of helpful nurses who treated my arms with the respect they deserved, and I trust that message got back to those nurses and encouraged them to "go and do likewise" next time.

It REALLY shouldn't be this way. But it REALLY is. At least a colonoscopy gives you adequate time to prepare for your starring performance as a LE advocate -- emergencies are a whole lot trickier!

Hey, hey! We'll all "be there" with ya'! Stock up on those popsicles!
Binney

Hey Sheila--you educate them!  What pioneers we LE women are!!  I wish you all the best.  Becky

Sheila, that's terrific! The last time I had outpatient surgery, the nurses asked about arm precautions (well, I was in for a revision to my bilateral breast recon, so certainly it should have been on their radar screen!). What I really liked was that one of the nurses put a length of tape on my affected arm, which ran from shoulder to wrist, and she wrote on it in all caps ARM PRECAUTIONS-DO NOT TOUCH THIS ARM.  I asked, and she said this was standard procedure, to make sure that at every step of my journey, staff would see the tape and I would not be relying on every one reading my chart notes, especially if for whatever reason I had a change of support staff. (That's kind of scary: we cannot rely on everyone reading our charts?) Also, if anyone was tempted to use the arm, it would be perfectly obvious to everyone else on the care team.  Can you ask the admitting team to plaster your arms with some similar message?

Best of luck--

Carol 

Sheila--Good luck.  I hate the prep. but sounds as if you made the best of it.  Becky

Namaste!

Good luck today Sheila.  Just a note about IV starts. Preop nurses (I am an RN in preop and recovery) in a busy unit are usually more experienced and skilled in peripheral IV starts on upper extremities than anesthesiologists. Anesthesiologists in most places don't start IVs on a regular basis and thus may not be as skilled as the RNs.  I would recommend asking for the most experienced IV starter and not for the anesthesiologist.  In regards to the foot IV, it can be done of course but it is not without increased risk of developing blood clots and infection and would be contraindicated if an individual has peripheral vascular disease.  Some places have policies that do not allow RNs to start a lower extremity IV in an adult because of the increased risks.  In this case the anesthesiologists are the only ones who can do it.

One peripheral IV site that can be used is an external jugular vein in the neck.  Looks horrible, is an awkward place to have it, but when arms and legs are not good choices it could be used.  The anesthesiologist would be the one to start this IV.

Some of my patient's like to have numbing of the site first and some dislike the second stick involved.  For me, it distorts the approach to the vein and makes it more difficult to enter the vein. But no one should have to wait for lidocaine in order to numb the puncture site.  The RN can use just plain sterile saline for injection for the numbing.  Studies have shown it is just as effective in numbing as lidocaine.

Karla

When I was admitted to the hospital two weeks ago, they put me on a special half peds/half cancer patients floor, so the nurses were very familiar with LE.  Luckily!  When I talked to the first nurse, she had her nursing student immediately print NO BP or pricks in right arm signs for both the door and above the bed.  It worked great.  Just another adition to all of the other precautionary methods. 

For my surgeries, the hospital pre-op nurses did the same thing as Carol's did - a big piece of masking tape going from wrist to shoulder with big NO RIGHT ARM PROCEDURES on it. 

Also, during pre-op when I'm doing the meet-n-greet with the surgeon, residents, OR nurses, anesthesiologist, and various other and sundry medical people who will be in OR, I always make a point of pointing out the tape and looking each of them in the eye and saying that I do not want to wake up with a cuff, IV or anything else on the arm. So far so good.  

Sheila - I also drop off those papers whenever I get a chance, and I've heard the same comments from nurses thanking me and saying that they were really informative.  I'm glad they thanked me, but it makes me sad that LE info like that apparently comes as something new to them.   

Binney and Hanta-Yo, Can you clarify something for me?  Is the jugular vein considered to be inside or outside the 'affected quadrant' on the side of the body where we have arm or truncal LE?  I would have thought the neck is included in the quadrant, so I'm surprised that an IV taken there offers any protection.  But what I do not know about LE would fill an encyclopedia (do they still publish those?), so certainly could have misunderstood the extent of an LE quadrant.

Carol 

Thank you, Binney.  My LE encyclopedia is a little less empty now.