Blood pressure cuff during surgery

nette67

Hello, please bear with me, as I am very new to this. A brief history: diagnosed with invasive Jan. 05 mast. the same month with four more surgeries last year. My last surgery was in Feb. 06 to replace a faulty port. I woke in recovery to see a blood pressure cuff on my affected arm and was horrified. Prior to that I had slight edema, but nothing like now. My hand and wrist are horrible, and I've been doing PT every day for three weeks, with little to no relief. I wear my bandages faithfully but am getting very depressed. My question, how could they have put a cuff on when 1) I explicitly let them know before surgery, 2) the port was put on the inside of my left breast with my right side and scar fully visible. Do I have any recourse? It's taking a toll on my financially ( I leave work an hour early every day for PT) and physically. Thank you in advance.

Carmelle

HUGE problem!
This has happened to me at every surgery.
I am so sorry.
Last surgery a keen nurse had a bright idea.
She took a loose arm bandage sleeve.
Covered my entire right arm wrist to shoulder and in bold red marker wrote on the sleeve in huge letters NO INJECTIONS NO BP THIS ARM!
The gave it to me upon discharge for any future surgeries.
I'm sorry this happened to you and hope it gets better.
Michelle

PookieBear

Sorry to hear of your complications. There really is no excuse for what they did. Don't know whether or not you have any recourse. You certainly need to let the hospital/doctor know what happend. I stayed overnight after my partial mastecomy and sentinal node biopsy. Everytime the nurse came in that took my vitals I had to tell her RIGHT arm only! I could understand it the first time - the nurse who only takes the vitals doesn't know what you've had done, where, etc.
But every time she came in (5 in all I think) I had to tell her. Luckily I was awake most of the night and my husband was there too just in case.

Keep us up to date on how you are doing.

Binney4

Oh, Nette, I am so sorry. I can just taste your frustration and anger. I wish your idiotic surgery team was the exception to the rule, but I'm afraid you have loads of company on this. Once we're unconscious it just seems like lymphedema (LE) ignorance reigns supreme! (Actually, I just told my husband about your post and was complaining to him again that we have to keep on educating the medical community. His suggestion was that all us ladies form a traveling hit team instead. It's a thought!)

I have no idea what your legal recourse might be, but I'd guess it'd be an unhill battle, seeing that 5 breast/chest surgeries could certainly be blamed for the LE, and the association of the blood pressure cuff would be difficult (impossible?) to prove. But you sure do have resources here, as you've got a whole "family" of LE sisters here who shares your grief and would love to help and encourage you in any way we can.

Are you satisfied that your LE therapist is fully qualified and experienced (at least 135 hours of specifically LE training following PT certification and at least a year of supervised LE therapy experience)? LE therapists have no legally enforced training or performance requirements, so their skills vary widely and we have to be our own quality control officers. If you need help finding someone qualified, there are ways to do that. And I wondered, were you already in treatment for the LE before this last surgery? I know it's like closing the barn door after the cows have escaped, but for future surgeries and procedures you can either wrap your arm beforehand or write instructions all over your arm with permanent marker (comes off later with alcohol). They laugh, or they shake their heads and call you nuts, but they do leave the arm alone that way.

As far as recourse is concerned, Nette, in this case it's true that "the best revenge is living well." Take heart -- eventually you really will get the swelling under control, and because you've acted promptly it'll be with the least possible amount of tissue damage. The fury and frustration tend to recede some once you get your life back into your own hands and know how to keep everything in control. It takes some doing, but we're here for you.

It'll be good!
Binney

nette67

Thank all of you so much! I feel like I have finally found a home! I believe my therapist is qualified, she is an actual PT and is going for her MA. I have few other options, other than driving 75 miles one way. I had not gone to treatment before the last surgery, but had mistakenly been fitted for a sleeve before any fluid had been reduced, total waste of money. I don't mean to be a whiner, but I had thought this was going to be a better year, and so far not looking so good. I was just taken off Herceptin last week after 10 months of it because of the effect on my heart, so I now have that additional worry. Thank you for being so friendly and welcoming. I do appreciate it!

Binney4

Nette, don't even call it whining -- it's just sharing, and all of us here can identify. (You might want to look back through the previous posts on this board for a couple of threads called "I can't seem to get my mind around this" and "Lymphedema sucks" -- you get the idea!)

I can't help it -- I'm curious about your doing therapy for 3 weeks and seeing no progress at all. That's not real common (though it's not unheard of either, unfortunately!) Is your therapist doing massage daily? Has she taught you to do it? Has she showed you exercises to do while wrapped? Are your fingers wrapped as well? It just sounds so discouraging, and I'm rooting for you to finally see some progress and get some relief. After bc, LE hits with the force of steam engine at full throttle. I keep wanting it to be nothing more than a pesky inconvenience, but it has an emotional component that truly takes your breath away. (The ignorance and unconcern of the medical community doesn't help any. They seem to feel, "We saved your life, so what's your problem?")

I'm really sorry about the Herceptin -- must feel like somebody jerked the safety net out from under you. Sending prayers and cyber ((((((hugs))))))) your way,
Binney

ocean

I posted a question about this today. I am scheduled for surgery and am worried this will happen. I am thinking to ask my PS to write on my right arm no BP/no needle sticks this arm!!

Babyface

Carmelle that is so interesting. When I had my recent biopsy on my other boob(neg ty very much and they were doing a local but had the IV, and anestestic(sp and Im too lazy at this time of night to check my spelling:) just in case., my nurse did the same for me. She said and I quote" Ive seen too many things happen that shouldnt" I thought she was a doll. Other procedures, Ive had to actually debate with one nurse on blood being taken when she didnt like the veins in my "good" arm

Anonymous

Hi nette. That just absolutely sux. Sometimes you wonder what goes thorugh these peoples heads.

Ocean I read a post a few weeks ago and someone had an excellent idea........use permenant marker and write on the arm to NOT have BP cuffs,sticks or pokes on that side. The next question of cousrse is will the people read it and respect it.

EastsideFan

I agree with the writing it on the arm prior to any procedures. I've had nurses argue with me, though never the oncology nurses. It's always someone not used to BC patients, like an ER nurse. Big letters in permanent marker, it's the best possibility, as even a sign over the bed gets ignored (assuming they get one hung at all!).
SharonA

catgirl

I had a sign over my bed while in the hospital after my surgery. One nurse came in and said "I dont know if that sign means your right or my right so maybe I should use your leg for bp." I was fully awake and alert at the time but she didn't even bother to ask me...I did instruct her that it meant not to use my right and she proceeded to do bp in my left arm. I am going to look into getting a medi bracelet hopefully that will help. You never know what may happen in an emergency situation if your not able to communicate with anyone.

azdarleen

Hi Nette,
So sorry to hear about your LE, I know your frustration about it, I just joined the LE club in Jan, and I still have a hard time with it.
There is a great book out that several of the LE sister told me about, and I have really used it.
The name is Lymphedema A Breast Cancer Patient's Guide To Prevention and Healing, it is by Jeannie Burt and Gwen While, make sure you get the Revised 2nd edition.
It is a good source of information.
The last time I was in the hospital (from an infection on my LE arm) there was a sign above my bed, but I still had to tell a couple of nurses no BP on my right arm. I think next time I will use the marking pen, I like that idea.
You are in my prays,
Hang in there and we are all here to help
Hugs
Darleen

rrs

I had a D&C recently and they let me keep my compression sleeve on. I'm scheduled for a hysterectomy in a few weeks and I doubt they will allow that due to the nature of the surgery. I think I'm going to write on my arm for sure.
I have a bright pink "Alert: Lymphedema - no blood tests, blood pressure, no IV or injections into this arm" band that I think I got when I joined the Lymphedema network or something - maybe it was when I ordered something from Peninsula Medical. It has www.lymphedema.com on the back. Maybe you can order one from them.
Someone on the Hystersisters site said that she wore bunny slippers while in the hospital and that made people smile and therefore made her recovery faster. I think if I wore bunny slippers and had writing all over my arm people might just think I'm a little kooky.

ocean

I had my surgeon write over the entire arm NO BP CUFF/NO IV'S THIS ARM, and then he signed it. It worked!

jbc2

Yes, that absolutely sux. I can't believe they did that. Makes me mad for you.

One other suggestion. Last time I was sedated, I told the nurse prior to my procedure not to use that arm. She took a couple of pieces of masking tape and put them down the entire length of my arm with instructions not to use that arm. It made me feel a whole lot better that they would remember. I wasn't so sure the tape would stay, but it was still there when I woke up.

Sierra

Hi Gals:

I got some free bracelets
bright pink
from

lymphedema.com
Peninsual Medical, Inc
Reidsleeve

l-800-29-EDEMA

some yrs ago

try them

That arm should never
be used..

best to all

Hugs

RobinTN

Thanks Sierra,I just ordered one! I hope it comes soon,as I am having my port replaced next monday and certanily dont want my bad arm used!!!

momto7

What do you do if you have nodes removed from both sides? How will they take the BP and put in the iv's ao gp for my pre op Monday and I am sure going to be asking .

purple32

Too late for many of these posts , but some will come to this thread later on so ...

The Lymphedivas line has just designed a spcial sleeve ( bright yellow) with a caution all over it that can be worn during surgery.

Do a search on the forum or else google and contact Lymphedivas.

They are very responsive.

Perhaps someone else can come on with the exact link (?)

lionessdoe

I was recently in a car accident. But I am Ok. I can't help but wonder what would have happened if I had been knocked out and taken to ER. Too bad we can't have no cuffs, no needles, no IV's tatooed on our bad arms. Doesn't any body make a sticky tatoo for this? 

Binney4

There's a discussion about this on the other thread, but I just wanted to say again, that these are NOT necessarily safe to use during surgery. They can twist and create a tournaquet effect that will cause the same problem as a blood pressure cuff. LindaLou says she has used a sleeve when sedated, but not anesthetized. Surgeons too often know little about lymphedema and may not be aware of the problems that are possible with day sleeves, so be sure to check with a well-trained lymphedema therapist before using this sleeve for an event where you'll be unconscious.

A safer bet for surgery is a G-sleeve or something similar you make yourself from a length of stockinette:
http://www.g-sleeve.com
Do make sure your surgeon is aware of your arm issues and has written restrictions into the surgery orders.

Be well!
Binney

SpecialK

I have a medical alert bracelet that says no BP/IV/needles in right arm.  Do not put lymphedema on your bracelet - many firefighters/ambulance personnel do not know what this means.  My son is a firefighter and when I was having the bracelet engraved I called him and had him take an informal poll of his co-workers.  I also have a bracelet from a company called Road ID with the same information on it for when I exercise.  It is a rubber bracelet like the Livestrong ones.  They are very inexpensive, here is a link:

http://www.roadid.com/Common/Products.aspx

Lou10

Nette67, so sorry for what happened to you!  

I ordered a medical alert bracelet from the National Lymphedema Network. While it does use the word lyphedema, it is more specific than that (and thus may actually educate first responders and health professionals).

"LYMPHEDEMA ALERT: No blood pressure, no needles into right/left/both [you choose when ordering] arm."

They also have necklaces for people with lower extremity lyphedema.

The only drawback is I've assumed I have to remove it before MRIs as it is metal (maybe I don't  ... will ask next time), and I don't find it easy to remove. I forgot to put it back on before having a colonscopy so I just wrote on my arm with a felt pen.

cinnamonsmiles

I have blood pressures taken on the leg and IV's are in the top of my foot/ankle. I get blood draws from there,too. Occasionally a nurse or two will give me greif, but I stand my ground!! NO BPS OR NEEDLES IN MY ARMS!!!!

While I was hospitalized after a surgery last year, I was awake early in the morning. The CNA came in my room to take my blood pressure and was going for my arm. I told him you can't take it there. He said it was never passed down in report. He wrote it on a white board above my head, but what good does that do in the half dark?

I let the head of the nursing dept. for that unit know what had happened to me. You can't trust that they will do what they are supposed to do. 

I used to be a CNA in a nursing home unit for people with moderate to severe dementia. They can't speak for themselves....

I wonder what is going to happen when patients with LE starting to need nursing home care and can't speak for themsevles?

Anonymous

I got a very lovely alert bracelet. Now I'm worrying that it looks too much like jewelry...

I found this site and may get a couple of these to keep in my purse and car in case I forget to put mine on when I leave the house.



http://www.mediband.com/All-Bracelets/c38/p293/Axillary-Lymph-Nodes-Mediband/product_info.html

purple32

not put lymphedema on your bracelet - many firefighters/ambulance personnel do not know what this means.

Such a great point, special k!
Thx