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May 4, 2006 12:24PM
Lini, don't freak -- there are sensible precautions to take that can help with prevention. Trouble is, we rarely hear about them from our healthcare providers and many of us have even had doctors and/or nurses (not to mention lab techs) scoff at us for taking preventive steps.
You'll find that the National Lymphedema Network recommendations are to avoid all blood tests, IVs, injections, and blood pressure on an at-risk arm, which if you've had bilateral surgeries means both arms. My onc's office knows this and is scrupulous about avoiding it, my surgeon thought I was nuts to avoid it, and my PCP didn't have a clue one way or the other. Each of us has to decide what tack we'll take with this, but as you can see, those of us who have developed it are way over on the conservative side. Too late smart!
All that's easier said than done. Here's how this actually works:
1.) Blood pressure on leg -- rare is the nurse who has any clue how to do this! You have to be lying prone for at least 5 minutes before they check it or you will get a reading that is higher than it should be; they can put the cuff on your calf with the stethoscope on the pulse point near the inside ankle bone and take bp there in the usual manner. They don't want to take the time to do this (5 minutes on most doctor's schedules is practically an entire patient visit!) If you insist, they can be irritated or sneering. They may tell you you're flat-out wrong. Remind yourself that many (most?) med schools in this country spend less than one day on the entire lymph system and nursing programs may not cover it at all, so they don't know about this. And anyway, they're probably overworked and don't want to deal with it. This is YOUR arm, so you're the only advocate.
2.) Blood tests -- lab order sheets need to have "Draw from foot only" written right on them by the ordering doctor. Then you'll have to call around and see where there's a lab with someone trained to do it. If you can't find one then maybe your onc's office nurses would be good enough to do the draw for you.
3.) IVs -- When you're going in for a test or procedure where an IV is required, it needs to be written on the doctor's order that it has to be done in your foot. You also need to call ahead of time and make sure they'll have a staff member there who can do it at your appointment time; if you don't, you'll have to wait around while they call somebody in.
4.) Anesthesia -- You can have all this stuff written in the orders, you can alert everyone in sight beforehand that they can't use your arms while you're unconscious, and you might still wake up to find either an IV or a blood pressure cuff on the arm. Women here have made assorted suggestions to prevent this. You can write all over your arms with a permanent marker (comes off later with alcohol) "No bp here" and "No IV this arm". One woman's surgeon wrote it for her AND SIGNED HER ARM! Great solution! Others have had nurses outfit them with stockinette sleeves with those messages written on it. Whatever. It's tricky. If you're staying in the hospital, techs will try to use whichever arm is easiest to reach and may ignore signs on the door or above your bed, so it helps to have someone with you to waylay errant techs and nurses.
There are plenty of women who either don't know they are at risk, or they don't have the energy and oomph to stick up for themselves about this, which is why so many of us here are on personal campaigns to educate as many healthcare providers as possible. It helps to arm yourself with a copy of the NLN prevention guidelines when you go in for a doctor's visit and gently explain the reasons why you won't be letting them do bps or blood tests on your arms.
Then again, as Ocean suggests, LE is certainly not inevitable, even for some women who take no precautions whatever. We really don't know who is at greatest risk, because we don't have research to tell us what all the risk factors are. All we have is those NLN prevention guidelines and the free will to choose how we deal with that knowledge. We're all so gloriously different!
Bottom line, if swelling develops there is treatment available. It can reduce the swelling, help you keep it under control, and help prevent infection and permanent skin and tissue damage. As with every step of this bc journey, knowledge is power.
Sorry to be so long-winded!