Posted on: Mar 23, 2006 08:17 AM
Joined: Mar 2006
Posts: 2
nette67 wrote:
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.
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Carmelle
Oakville, On
Joined: Mar 2003
Posts: 1,718
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Mar 23, 2006 08:50 AM Carmelle wrote:
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
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Mar 23, 2006 08:51 AM PookieBear wrote:
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
Joined: Aug 2004
Posts: 8,377
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Mar 23, 2006 10:00 AM Binney4 wrote:
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
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Mar 23, 2006 10:19 AM nette67 wrote:
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
Joined: Aug 2004
Posts: 8,377
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Mar 25, 2006 06:10 AM Binney4 wrote:
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
Joined: Dec 2005
Posts: 116
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Apr 7, 2006 05:43 PM ocean wrote:
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!!
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Apr 10, 2006 10:11 PM Babyface wrote:
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
rhymeee
Joined: Aug 2005
Posts: 3,494
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Apr 10, 2006 10:47 PM rhymeee wrote:
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.
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May 6, 2006 10:23 PM EastsideFan wrote:
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
Joined: Dec 2005
Posts: 210
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May 7, 2006 06:31 AM catgirl wrote:
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.
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May 7, 2006 07:57 AM azdarleen wrote:
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
Joined: Mar 2005
Posts: 920
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May 7, 2006 03:35 PM rrs wrote:
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
Joined: Dec 2005
Posts: 116
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May 7, 2006 04:37 PM ocean wrote:
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
Joined: Jan 2006
Posts: 11
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May 7, 2006 06:26 PM jbc2 wrote:
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
Joined: Feb 2004
Posts: 1,542
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May 8, 2006 03:51 AM Sierra wrote:
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
Crossville, TN
Joined: Jan 2006
Posts: 1,477
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May 14, 2006 12:12 PM RobinTN wrote:
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
mt Vernon , IL. USA
Joined: Oct 2012
Posts: 120
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Nov 4, 2012 03:28 AM momto7 wrote:
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 .
" What doesn't kill you makes you stronger "
Dx 11/26/2008, DCIS, 1cm, Stage I, Grade 3, 0/2 nodes, ER+Dx 5/27/2012, ILC, 1cm, Stage II, Grade 1, 0/2 nodes, mets, ER+Surgery 09/17/2012 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Hormonal Therapy 10/22/2012 ArimidexSurgery 11/08/2012 Mastectomy (Both); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
purple32
MA
Joined: Apr 2012
Posts: 2,693
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Nov 4, 2012 06:23 AM purple32 wrote:
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 (?)
purple32. Hope is our light ... in the night.
Dx 3/2012, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-Surgery 05/01/2012 Lumpectomy (Left)
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Nov 4, 2012 09:17 AM lionessdoe wrote:
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?
Doe
Dx 9/5/2007, IDC, 1cm, Stage IIIa, Grade 2, 4/19 nodes, ER+/PR+, HER2-
Binney4
Joined: Aug 2004
Posts: 8,377
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Nov 4, 2012 09:58 AM Binney4 wrote:
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:
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
Tampa, FL
Joined: Feb 2011
Posts: 5,732
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Nov 4, 2012 10:03 AM, edited Nov 4, 2012 10:03 AM
by 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:
www.roadid.com/Common/Products...
Dx 9/27/2010, DCIS, Grade 3, ER+/PR+, HER2+Dx 9/27/2010, IDC, 2cm, Stage IIb, Grade 3, 2/14 nodes, ER+/PR+, HER2+Surgery 11/01/2010 Mastectomy (Both); Reconstruction: Tissue expander placement (Both)Surgery 12/06/2010 Lymph Node Removal: Axillary Lymph Node Dissection (Right)Surgery 12/21/2010 Reconstruction (Left)Surgery 01/07/2011 Reconstruction (Left)Surgery 01/21/2011 Reconstruction (Left)Chemotherapy 02/17/2011 carboplatin, TaxotereTargeted Therapy 02/17/2011 HerceptinSurgery 07/20/2011 Reconstruction: Tissue expander placement (Left)Hormonal Therapy 08/01/2011 FemaraSurgery 02/24/2012 Reconstruction: Breast implants (permanent) (Both)Hormonal Therapy 06/20/2012 Arimidex
Lou10
Joined: Feb 2011
Posts: 301
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Nov 4, 2012 12:29 PM Lou10 wrote:
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.
Diagnosis: 12/15/2010, IDC (plus DCIS & ILC), 2.5cm IDC, Stage IIb or III (unknown -- radiation to lymph nodes instead of ALND surgery), Grade 2, 2/2 nodes (sentinel and intramammary fully involved with extracapsular extension), ER+++/PR+++, HER2-
Surgery 01/25/2011 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 04/13/2011 Cytoxan, Ellence, fluorouracil, TaxotereRadiation Therapy 09/14/2011 ExternalHormonal Therapy 11/07/2011 TamoxifenHormonal Therapy 08/22/2012 Femara
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Nov 5, 2012 07:47 PM cinnamonsmiles wrote:
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?
Mastectomy without reconstruction was NOT the worst or only available option. I chose it and am happy with my decision.
Dx 12/2/2010, DCIS, Stage 0, Grade 1, ER+
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Nov 5, 2012 08:12 PM Dulcigirl wrote:
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.
www.mediband.com/All-Bracelets...
"I believe in being strong when everything seems to be going wrong. I believe that happy girls are the prettiest girls. I believe that tomorrow is another day, and I believe in miracles." ~ Audrey Hepburn
Dx 9/12/2012, IDC, Stage ISurgery 10/16/2012 Mastectomy (Both); Reconstruction: Tissue expander placement (Both)
purple32
MA
Joined: Apr 2012
Posts: 2,693
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Nov 5, 2012 09:02 PM, edited Nov 5, 2012 09:02 PM
by purple32
not put lymphedema on your bracelet - many firefighters/ambulance personnel do not know what this means.
Such a great point, special k!
Thx
purple32. Hope is our light ... in the night.
Dx 3/2012, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-Surgery 05/01/2012 Lumpectomy (Left)