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

cookiegal

cookiegal

I can't believe I got that picture to post just by cut and paste

Here is the link..they are only $12 

http://www.tlcdirect.org/products/sku-8212__dept-131.html 

SheChirple

Okay, it may be harsh, but for those of you with LE, or any concern about a doctor ignoring your clear directions regarding refusal for procedures, here it is "If you do ABC/XYZ against my wishes, I will SUE  YOU for medical malpractice".  Yes, money speaks. It may seems extreme, but it is your health.

WE all know that the standard of care is to NOT take BP or place IV in affected, or possibly affected arm. Surely your medical PROFESSIONAL should.

carol57

Cookie and SheChirple, you are both so right to see it this way.  I am chuckling big time at Cookie's idea to get an attorney to advertise on a pink sleeve. Perhaps you were half joking, but even so, the half serious part really does express the problem perfectly.

Marple

Lol @ Cookie's ad idea.

coraleliz

I would never mention the word "sue" when dealing with doctors. What will probably happen is you'll get a registered letter in the mail stating that s/he wil no longer care for you. This happened to a friend of mine who said something to her GYNs office staff. She didn't mention the word "sue" but said something about contacting an attorney.

I'm still struggling with the BP issue. I had bilat BC & nodes removed by both sides. Usually the person who checks my BP is low on the totem pole(usually a medical assistant). I explain that I've had nodes removed on both sides & can they need to use my leg or skip it. Twice they just skipped my BP altogether. My current thinking is I'm only going to let my PCP check my BP because she is the one that will prescibe treatment if it should ever become elevated.

carol57

Coraleliz--points very well taken!

ktym

Coraleliz, I agree, although my first instinct in reading this was to say SUE.  But, I think making your providers nervous around you or angry isn't good either.  I would however, recommend someone in that situation calling patient relations. They tend to be strong patient advocates.  Them you could tell you're angry enough to want to talk to a lawyer. Get it off your chest and let them intervene

camillegal

I really have to commend all of u for taking the time to know all u do know--I go to the same Drs. all the time, they all know and don't;t use my arms for anything. But U are the ones that really pay attention and know what is going on. U R amazing women Good Luck to all of u.--But there are to many of us. (I think)

cbm

I have very mild LE and I plan to keep it that way if I can.  In 2009, after bc surgery and chemo, I had a hysterectomy and oopherectomy.  Fortunately,  I was able to have the DaVinci procedure, which seems to be easier and less demanding post-surgically.  

I asked repeatedly to meet the anesthesiologist, because I had difficulty with the drugs they gave me for the mastectomies, and I wanted to him before surgery.  That's apparently a problematic request; the nurse anesthetists do all the work and then the doc takes over.  I got into an argument with the nurse anesthetist over the double IV that aparently DaVinci requires.

Apparently, if you crash during DaVinci, the docs are not in the OR with you (who knew?) and they therefore want reliable back up IV in case one fails.  You also need a pressure cuff where there is no IV.  That doesn't leave many limbs.   I was insisting on Right arm, IV, Left leg IV, Right leg pressure cuff, but the nurse was having none of it.  

I told her to relay to whatever doctor got to decide, that if the use of my left arm was a condition of the surgery, which I regarded as completely elective though highly desirable, I would be leaving before the procedure.  And making other arrangements.

The anesthesiologist came in and completely agreed with my recommendations; he was on board right away.  In fairness, the DaVinci gets you into weird positions and at the time was relatively new in my town, so I imagine I was taking a risk.  The nurse is the one who is physically present in the OR, and she was none too happy or confident.  

If you had nodes removed on both sides, I imagine you should not consider a tyoe of surgery requiring a back-up IV (in normal surgery they can simply reach you with a hypodermic needle, I think, but with robotic, apparently they need three limbs). 

That is the only time that I can remember since my surgery in 2008 when anyone has ever tried to insist on using my left arm for anything, most everyone has asked "Which arm?".

Warmly,

Cathy 

bc2007

This happened to me, too. I had orthoscopic on my knee on the 15th of Feb 12. The pre-surg nurse came in and appoached my affected arm. I placed my other hand on the cuff and said NO, I am a breast cancer pt with lymph removal and you need to use the other arm. She continued to pump despite my protests declaring, 'I've been doing this for 30 years and that is old school thinking'. I am livid about this and it is the first time since my diagnosis in 07 that I've been 'dissed' in this manner. I wrote to the nurse in charge about it and she agreed with me that it should not have happened. My question to anyone: Even though I do not NOW have any symptoms of lymphodemia, how long after an 'episode' like this could it happen?

Momine

I went in for the hysterectomy yesterday and was curious about how they would deal with my arms. The nurses were actually more responsive than the doctors. On arrival, I needed various testing, including blood, and I had two docs trying to convince me that it was fine to use my hand. I insisted on the foot, and the lady in charge of the lab complied and was nice about it.



In the OR they used my foot and my neck for the IVs and then the other foot for the blood pressure cuff. They did not seem to fazed by any of it. Initially the anesthesiologist wanted to put a temporary IV in my arm, but once he saw it, he realized that I might actually have a point. So he moved to the foot, and did not bitch about it. They do take blood pressure on the better of my arms, but I asked them to keep it to a minimum, and they have.

my2boys

I am scheduled for a colonoscopy next month.  At the consultation visit with the doctor, I told him of the lymphedema in my left arm and my preference that they don't use my right arm.  He had his staff request a nurse to be present at the colonoscopy who can access my port.  I think it is probably better to alert the doctor ahead of time instead of waitng until the day of the procedure. 

lvtwoqlt

My2boys, I asked at the time of my consult to avoid my arms and the doctor thought I was being difficult. I asked at the same day surgery center when they did my pre-op and they told me that it wouldn't be a problem using my leg for bp and IV.  I don't have a port so that wasn't an option.

Sheila 

my2boys

Sheila,

I am happy they were able to accommodate you.  Sorry to hear about the difficult doctor.

kira66715

bump