What are negative effects of taking BP on lymphedema arm?

Kathleen, my surgeon told me not to worry, I had a 3% chance of LE--although in my notes, it was the first thing I asked her about--some sense that I had inherent risk.

It is very, very disabiling and stigmatizing, and yet we can work to make the disability less: I found that the first year or so was the worst, both in terms of control and adjustment. 

There are women who post that it is just a chronic condition, and we should all adjust to it easily, yet Binney and I write each other back and forth all the time about the stigma and the fact that it's tied up in cancer diagnosis and the fact that it is embarrassing--yet having other issues--like carpal tunnel syndrome and splints--don't carry the same baggage.

Pat O'Connor, who has primary LE, wrote about emotional issues with LE:

http://www.stepup-speakout.org/patoconnorcopng.htm

I just HATE when LE causes us to substitute activities or give up things we love. 

I see you're from Pittsburgh: I spent time a Magee when I was a graduate student, and I know that they have done studies there on LE--there is a doctor, Atilla Soran, who initially published about the laser--not impressive study. They also have the "Strength and Courage" DVD that Katie Schmitz likes--I like the stretches, I would just be careful with the weight lifting. 

My DH grew up in Pittsburgh, and we were there for 5 years during grad school--living in Squirrel Hill. 

So, I think we need to acknowledge the limitations, and I personally tend to overdo the restrictions--essentially out of fear--I am terrified of flairs and cellulitis, etc. It was so liberating to get back on a plane, and I think that if we gently and consistently push our boundaries, we'll feel better about dealing with this on a daily basis.

Kira

I would like to add a happy note to this discussion. 

Yesterday I had my stage 2 revision surgery (feel pretty good today!), at Northwestern Memorial in Chicago. The very first nurse I saw during surgery prep asked me if I had any arm restrictions, before she even glanced at my surgical record.  When I responded that my left arm should not be touched, after losing 5 nodes in my original surgery, she immediately ran a length of paper tape on that arm from wrist to shoulder, and wrote NO BP-- NO Needles--NO IVs in huge red letters on the tape.

I asked her what she would have done were I at bilateral risk, and without skipping a beat, she said she would mark the other arm and do the necessary BP/ IV using my leg/foot.  I was fully prepared to push the issue if I needed to, but wow...the nurse was full on board with arm precautions.

From what I read on this forum, my experience may be unusual, and indeed when I had my bmx/recon at the same hospital last July, I did have to argue to leave that arm alone.  Apparently I had one perfect experience in a most imperfect LE world.

Carol

Hey Carol, glad to hear it went well.  Binney, thanks for the tip. I had a great experience when I had my colonoscopy/endoscopy last month with no hassles on BP, wearing sleeve.  In fact they were quite knowledgeable about LE.  I am going to get a letter off today thanking them.  Becky

I do know the terrific nurse's name and will definitely send an admiring letter to the hospital; what a great idea! I am feeling pretty good, glad it is behind me, and fully focused on a strong and speedy recovery. Need to be able to bake tons of holiday stollen!



Carol

Jane, that's somewhat humorous, and if it's true, well....at least one more nurse knows to ask about and respond appropriately to LE. 

Jennifer, how horrible!

I've seen some really nasty port infections, and also breast cellulitis, which it sounds like you may have had.

There is this movement to "debunk" risk reduction practices, and then you hear about something like what happened to you. 

I'm so glad you got the help you needed and are doing better. 

Good point about having a sleeve on as a strong visual reminder to leave it alone. The last time I went back to the rad onc, her nurse gave me such a hard time when I told her to leave my left arm alone! Come on--just take it on the right!

Recently heard from a surgeon who wrote the order to avoid the at risk arm, and walked in to find an IV in it......

The hospital that my office works with, has an electronic medical record, and at risk arm is on it, and virtually never filled out.

Kira

I work with kidney dialysis patients. They have a fistula in their arm for dialysis. They also cannot have bp's, needle sticks or anything that restricts blood flow to the affected arm. I teach them to just hold out the correct arm when they see a bp cuff heading their way. I second Kira's comment on the electronic medical record, Often a MD order can be entered into the record (often by the nurse). Depending on the electronic medical record, that order may appear on lab requisitions so the tech may know not to use a certain arm. It might be worth asking if an order can me entered into the computer. Just another possiblilty. I suppose I am more likely to ask a patient which arm to use.

When i had surgery I put kinseotape on my LE arm as an added barrier and wrote in surgical marker "no ivs or bps'