Casualty of U cant have LE from sentinel nodes removal

Natalie3

I am having a problem posting my cute doggie as my avatar.

Anyways, i saw my ocon and my PCP within the last 3 weeks.  The stupid ocon nurse could not get a BP on my thigh,  She was coming up with 225/180 !!  She tried 4 times.  Then i go to PCP, his nurse........same thing got a 180 reading on one of the numbers.

  I mentioned to Dr. i was a bit concerned because I didnot have my BP checked for over a year.  Asked if he thought he could take it on right arm (nodes removed on right, left arm in the WORST for LE )  He said he thought he could take it without a lot of pressure.  He did (132/80 !!), I wore sleeve that day and night and I had no problems.  

Anyone else have any experiences like this ?

Binney4

Natalie, it's hard to find nurses (or even doctors) who know how to do this. Here's information about it for doctors and nurses from the StepUp-SpeakOut site:

---For patients with bilateral lymphedema or bilateral risk, learn how to take leg blood pressures, foot blood draws and foot or neck IV’s if necessary.
http://www.medscape.com/viewarticle/471829

While popliteal thigh pressures can be obtained, many patients find posterior tibial ankle blood pressures are more comfortable:
http://www.ehow.com/how_5729015_check-blood-pressure-ankle.html

http://www.ncbi.nlm.nih.gov/pubmed/8912031
“Since the mean blood pressure readings obtained at the arm and at the ankle were statistically equivalent, we concluded that the ankle cuff placement provided a reliable alternative to the placement of the cuff on the arm.”

Some of the women here use a wrist bp monitor on their least-affected side, but you have to buy it and bring it with you, because they probably won't have one. It's less of a problem than the usual arm cuff, and causes nurses less fuss than a leg bp.

If they're trying to use your leg, you should be lying flat for several minutes before they take it. And preferably deep breathing and relaxing, because we're usually all cranked up from having to fuss with them over taking our bp.

My problem with teaching nurses how to do this is that the next time I show up it's likely to be some new person, so I'm back to Square One. Once I got an NP who knew exactly how to do it and made no fuss whatever--I was so happy I almost cried (!)

I've gone to my local fire station and had the paramedics do it when I needed to keep track of it on a regular basis. They always have known how to do it and don't make a big deal out of it.

If I can't get the nurses to do it correctly (some try to do it with me sitting up, or they don't want to give me a few minutes to lie still) I won't let them take it. I tell them it won't be accurate and I don't want them writing junk in my file.

Why is this so hard?!!

Be well!
Binney

 

Anonymous

Hi,

I'm new to this lymph life and am searching for bras for fuller breasts.  Any suggestions?  Just started treatment today for possible/probable truncal LE.

Thanks.

V