Ridiculed For Writing NO bps, No needles on arms
Well, I had the spinal implant for pain put in on monday for the 3 day trial. I have known the staff since 2011. I get blazed orange wristbands to wear for limb restrictions. At first, a few would forget to check my wristbands and I would have to remind them. Now they pretty much all rememeber.
When they saw what I had written on my arm, I had instructions for Left and right, I was ridiculed, made fun of, snickered at,argued that THEY would never do BPs or needle sticks on arms, and looked at like I was a freak of nature.
I was highly disappointed. That staff needs some training on LE (I posted a few days ago that one nurse was telling me it would just be a SMALL needle put in the arm and I replied it is not the size of the needle that can cause an LE flare up...that a mosquito bite could do it). AND I think they need some senistivity training towards people with LE.
Cripes, most of the time, we can't get our OWN doctors and nurses to repsect and know about LE, so I understand how they don't "get it." So they would have no idea what we got through to protect ourselves. HOWEVER, I deserve respect no matter what I have written on my arms. I learned the hard way, doctors will do what they want once I am totally out and under and on their table.
I went in feeling confident, more assured, with that written on my arms. I came out feeling like a freak and bulllied.
I will be writing the head of the unit a letter. And the nasty nurse I had problems with in the past and reported her, will no longer be able to work my case.
PS....I used a Sharpie to write on my arms before we left. I got home and the ink came off with a washcloth and water.But the washcloth came out with stains.
Comments
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Good for you! I just had a surgical nurse tell me that I'm not "really" allergic to latex because it's "just the adhesive" that gives me an itchy rash. So now after my biopsy I have a rashy armpit... I'll be going back for a lumpectomy soon, and you can bet they will NOT put that crap on me this time!
Your post makes me feel more empowered to stand up for myself this next time! Thanks for posting it - although I'm sorry it happened to you. -
Cinnamon....HUGS... Im so sorry you were BULLIED. What a horrible situation.
I'll PM you soon. In the meantime... good on you for holding your ground and please know you are not the only one who has had to put up with this idiotic behaviour..
Everyone who goes through this...please remember this. One of the very 1st tactics they use on you is to single you out...or make you feel isolated....like oh nobody else has complained...or we've never come across anybody before thats said/done this....
Its all to cover their own butt and make you look stupid at the same time. Im sick and tired of hearing this behaviour.
Maybe we should say, "do you treat all your patients like this?"
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Yup, I did the same ALWAYS write "no BP, no Needle, no TOUCHING" on my righ hand, and the arm. I have instructed members of my family that in the event that i am not coherent and they have to take me in, make sure they do the same. It's the only way to guarantee that no one touches the arm. Since it's written, they can be sued for touching the arm, no excuse like oh we don't see the band or your pink sleeve got rolled off. I love medical people and respect most of them, but I love my arm more.
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wow, I was at docs today, nurse started to setup my arm for BP but I said not this one
she was fine....then again, she used to work for my oncologist.....till it got to her and she switched to the urologist for less stress
guess I am lucky
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Wow! What a different experience than I had. The nurses were great! The anesthesiologist was the problem. A nurse offered to put paper tape on my arms & write no BP/needle sticks on it. Since I'm allergic/blister with adhesive that wouldn't work. What helped me the most was the surgeon(a young gynocologist) putting it in his initial orders that BPs & needle sticks need to be in the foot. The nurses seemed to "get it" but without a doctors order have to go with the arms.
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Somewhere in this forum is a very irate post about the surgeon who lied to staff in earshot of me that I didn't have any nodes removed, that I DIDN"T have LE, that I said I had it, that there was no record of it in my files. I reported him to his boss who within 30 seconds found the information. He also put an IV in my hand after I was totally out. Not one hosp. rep. NOT ONE would tell me why I woke up with an IV in my hand. The ONLY documentation of an IV in the hand was from some very smart nurses. I caught that surgeon in lies IN FRONT OF HIS BOSS covering his ass. I didn't catch onto the lies until after and promptly wrote his boss a letter. I never did hear an explanation on why he lied to the staff.
THAT surgeon is the reason why I chose to use a Sharpie marker because I know what lying jerks soem of them can be. Writing on marker on the entire arm...it takes a heck of a lot ot wash it off, I know for a fact that staff miss or don't bother to check blaze orange limb precaution wristbands, and they can take a sleeve right off and you will never know who or when it was taken off while you are under.
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Hello all, I am on both sides as I am a nurse and BC pt. Although I had only two nodes removed (my demand to only do two) I have not had any trouble with staff members respecting the 'not on the left side' request. Although I do not have LE, I also want to do everything to avoid it. One lab person said she would absolutely try everything possible to avoid using the left (difficult stick) even after the 6th stick when I was wavering! I also have adhesive, plastic, latex, etc. allergies, and frequently on steroids which make your veins blow easily, that people have worked around. Every time I have been in the hospital, a big sign would be taped over the head of the bed and no one had a problem with it. For my practice, I go with what the patient says, hands down, no question. I'm sorry to hear of others having so much difficulty. I say advocate for yourselves! In the end, you have to live with the results, not them. I also use the opportunity to teach about LE if they ask. Never had anyone resent that, most have not heard of it, although I think more people are becoming aware.
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I don't think this is necessarily a thing where we can even "take sides" as it were. The fact remains there can be some flippin arrogant people on the Med teams and then again some of them are exemplary with all that makes a patients life that much easier because they go the extra mile. Others just do their jobs and fit somewhere into the middle range... it seems to be those higher up tend to be the ones who are more likely to give you a bad experience.
Somewhere on the BC road someone said to me..."when all this is over you will know more than us". It's already a pity when some Medical people think they know more than they do, or what theyre trained for but to be argumentative or pushy about it adds insult to injury.. No one deserves to be lied to nor abused or their character attacked. Theres a time where a lines been crossed. I don't know how your system works in the US but Im sure you guys can do something about this when it does happen.
I've heard people say theyve had great staff all the way through....well thats great!!! but some have not and for those ones, it can cause a huge amount of unnecessary stress.
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Gosh, this makes me sad that medical professionals act this way! I have been extremely fortunate to have everyone respect me and ask me questions about LE - since I have it. My Oncologist was going to take my pulse and I asked if he could do it in my right arm. He apologized profusely and then asked me all about Lymphedema, etc.
I am sorry others have not had this experience. SET THEM STRAIGHT and go after them!!
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If Cinnamon had only 1 problematic(LE or at risk) side, it would be a lot easier for her & the medical staff taking care of her. With both sides being problematic myself, I've felt the frustration she writes about.
I get angry also. This makes absolutely no sense but if you have lymph nodes taken from one side only, you avoid BPs & needle sticks on that side. But if you have nodes removed from both sides, meh.....then it doesn't matter, use either arm. This makes no flippin sense & makes my blood boil.
I'm also a nurse, so I probably have a better chance of pleading my case than most women. Told my PCP that I wasn't going to have my blood drawn unless it could be drawn from my foot. Refused to get the flu vaccine the hospital offers(almost requires) all employees because employee health insisted it had to be given in the arm. My recent outpatient surgery went smoother than I ever expected & as i said before it's because I found a surgeon to write in his pre-op orders not to use either arm for BPs or needlesticks. I had envisioned myself walking out if they wouldn't honor this. My surgery wasn't urgent or life threatening. It was just a D&C/polypectomy I needed because of Tamoxifen......
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Hi Coraleliz, just curious, what did you do about the flu shot? My facility requires it or you must wear a mask at all times when at work. Yeah, that will work! Set for a fight this year as I am allergic to it.
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Coraleliz, my PCP wasn't doing flu shots last year and I ended up having to drive clear across town to get a flu shot at a place that does all kinds of shots for travelers to foreign countries. I called ahead to tell them I needed it in my thigh, not in my arm because of LE, and they were fine with that. When I got there the nurse who did it stopped, looked me in the eye and said, "Don't EVER let anyone talk you into using your arms!" Then she said it again before I left and added, "It won't hurt THEM, it'll hurt YOU--so don't let them do it!" Preaching to the choir
! But I can't tell you how relieved it made me feel--somebody who understood!There are good people in healthcare, but there are also a lot of really good people who have never been educated about LE. I've done nursing in-service for oncology offices, nursing schools (even NP classes), infusion centers, and the oncology unit in local hospitals on the subject "A Patient's View of LE." They come in slouching and ready to be bored, but when I start sharing some of the patient experiences they're invariably on the edge of their seats, full of questions. Some are sad--even in tears--when they realize that they've actually hurt some of their patients. But mostly they're angry that they've never been taught about this. They're intuitive, quick to use their knowledge to "connect the dots" and realize how what I'm saying relates to what they know about physiology. The whole issue is ignorance, and we can help with that. I never go in for any procedure without material to give to the staff about LE, and I tell them, "Here's the latest on LE management--I knew you'd want to know about it." They DO want to know.
Maybe this shouldn't be our job as patients, but it sure beats letting them do damage to us. As crazy as it sounds, it's us patients who can make the difference!
Onward!
Binney -
moni-I called CVS, Walgreen's & Costco & was told they wouldn't/couldn't give me a flu shot in my thigh. I stood in line at a flu-clinic run by the county. The public health nurses didn't have a problem with it. On their form, there were 2 boxes(right & left deltoid-I think). The nurse added a 3rd box(thigh), checked that one & that's where I got it. So, I didn't have to wear a mask.
Binney's right! I'm just not always prepared enough to handle the situation tactfully. H ad blood drawn out of my foot at the lab last time....but they can't do it this time. I had my TB test done on my leg the last 2 years......but they can't give me a flu shot in my leg. Same thing with BPs. Makes one want to avoid doctors. Speaking of which I haven't seen my PCP in over a year. I'm putting it off. She's one who tries to reassure me that my arms look "fine". But she does write for blood to be drawn from my foot(at my insistence)
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I had ALND on my right side 2 years ago. I will be having ALND on my left side in a couple months. I dread having to deal with this neither arm thing. This thread is helpful for teaching me some coping skills. I will be sure to check in with my LE therapist for guidance, to.
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I had nodes removed on the right side and and the veins in my left arm are unusable now - just can't get needles in anymore. Unfortunately for me, both my doctor and my husband think I"m being unreasonable about my arms and because I 'only had a few nodes removed and I don't have LE' they tell me its ok to use the right arm! To me, it feels like they are saying it's ok to play russian roulette with LE. I'm avoiding any tests that require a needle into my arms.
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JW, this is not their arm, it's yours. Perhaps another doctor on your team would be more cooperative? In any case, how about giving them a copy of this page, written for doctors by a doctor with LE:
http://www.stepup-speakout.org/essential informat for healthcare providers.htmAvoiding necessary medical tests shouldn't be necessary to protect ourselves!
Be well,
Binney -
J9W and Cinnamon, It is so sad when people won't respect our believes and research. Shame on them for making us feel small instead of in power.
I will never take a needle in my arm and have walked out of labs. Here is my question for the labs that won't do my needle in other parts of my body. I ask" So what do you do when an armless person comes in for bloodwork"Honestly they look at me dumbfounded and practically speechless then blurt out " I am sorry we don't do foot draws" They just don't "get it" BAH!
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Guys this all puts us between a rock and a hard place.
On the one hand we DONT want either arm compromised anymore than they are (ie getting bilat LE) and on the other the alternatives (foot and neck) require competency. Trust me, doctors and even SURGEONS!!! yes I said surgeons, can screw up big time on this. Give me a competent nurse anyday. There is no substitute for a great phlebotomist and thats really what we all need.
J9W regarding "I had nodes removed on the right side and and the veins in my left arm are unusable now" thats exactly how it is with me, and in fact it was so dicey they did my last chemo in my BC side!!!
. This is YOUR arm not anyone elses and YOU are the one who has to put up with anything that comes your way after the fact. There seems to be so much ignorance. -
i went to a thyroid and diabetic speclist and he would not do a Bp on my lumpectomy side as even though i had only sentinel node biopsy, it has potential to cause swelling and LE begins and he said, dont let them do blood tests either and people in that feild should automatically know this. so BP and blood tests are done in Opposite sides to my breast arm. But i don't what happens if you have Bi lateral bm, how do the blood pressure, thats the part i would want to know.
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Hey Midnight...he would do a Bp on my lumpectomy side.... did you mean wouldn't?
Not sure what you mean by BiLateral bm? Any lymph nodes out at all puts us at risk for LE for the rest of our lives. Thats a given written in stone. Moreover, there are a number of ladies here who have had one or only a few nodes out and have LE on both sides as well as truncal LE. Some of these ladies aren't overwieght, are fit and have "done all the right things" that way and yet a plane flight or a BP cuff has set it off .It can be largely an unknown.
However, on the other side, some of us will never get it and we might even get away with it even though we throw caution to the wind. In the end a person chooses what risk theyre wiling to take after making an educated choice. Step up speak out website has heaps of great info, though for us in NZ some products/services may not be available, but precautions and suchlike are the same no matter where we are on the globe.
http://www.stepup-speakout.org/What_%20is%20_Lymphedema.htm
I take it youre asking how they do the blood pressure if its not done on arms? I have mine done on the leg. Needles are done from the foot.
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sorry, i ment Bilateral, mascetomy, double. yes i changed it, i ment he would not do a blood pressure on arm that i had the lumpectomy done on, my mind races ahead of my hand and i miss out words, sorry and told me not to have bloods taken from that arm or needles put in there because of LE reasons, sorry me silly. i went back and read it and realised i had missed a word and altered it. it is probably lymph node desection under both arms. i am referring to. ouch needles under the foot would be painful, ow.
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Lol Midnight, not under the foot (OUCH!!!
) but on top, though sometimes you'd wonder if there'd be any difference when you get someone incompetent. |:-XWell of course it does happen but I havent seen that many having nodes taken (purposely) under both arms simultaneously. With a BMx the prophylactic side can have a few taken "inadvertantly". Also if our systems have been compromised before hand like an injury, this can be a trigger as well.
So...my understanding is that both arms are still at risk even if we only have a unilateral Mx, but the risk would be naturally be more with a BMx.
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lol ,,that would be painful on the foot too as it usually boney, but under the foot, oh man what a nightmare. yea well, do they only take one side to test for lymph nodes involvement or do they take the side that is affected, i dont' know, as i always thought if i got it in the other breast, they would take that side, would they or take the side that they took before, to test, i need educating. Would they take the same sentinel node and retest it or go the other side if the BC had got into other one and test that one. trying not to be a dummy, but its interesting, i do not unferstand the way they operate with that sort of thing.I had only the one removed and that was negitive. its like trying to get blood out of a stone getting info out of that lot here, you want to get info, its ask that one, or talk to them. fustrating, learn more on here.
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It's bad enough for all of us with lymphedema when we have to argue or educate medical people,but OMG, carol56pr!!!! To tell u that u were not allergic to latex! Please, do not let this go unreported. This could have been life threatening to you, or the next person
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Theres no question too dumb when it comes to BC.
Well for the parts that pertain to us all (nothing to do with what nationality we are...ie : we all have eyes ears nose and mouth etc) it seems to be the case that we do find out more here. Of course because our health systems can be based on a totally different premise, like things are funded differently etc. that has a major bearing on how we can effectively discuss this aspect.
The foot naturally poses more risk (LE risks aside) because it has a dense concentration of nerves, veins, ligaments etc and its great when it goes right but brutal when it doesnt. I can't imagine how "dangerous" I might get even thinking about the sole of the foot Midnight! I better laught instead...
Someone please correct me here if Im wrong or indeed giving correct but incomplete info....Im not totally sure but pretty sure that a tumor on the opposite side to the 1st ocurrence can only be a PRIMARY tumor and means you havent had a reocurrence as such. In other words its not metastatic, or secondaries from the primary tumor on the 1st side . Regarding node removal, it would naturally figure that they would only then take nodes from that side. Let me put it another way to also include when people simultaneously get BC on both sides... Whether BC occurs in both breasts at the same time or not, they are both independant of each other and both have "primary" tumors.
I know nexxt to nothing about the other lesser known BC types but I'm talking mainly about IDC.
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I get blood pressures taken in the lower section of either leg. I have found that with the electronic machines, they seem to malfunction more often in the calf area where the muscle is. I have had a few times where the pain was unbearable from the cuff squeezing to tight. I find if they put the cuff lower towards the ankle, I don't have any problems.
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I'm curious, what would a 'normal' BP reading be on the leg?
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Marple, that's a good question. It's usually a bit higher, though if they do it right (lying prone for several minutes before taking it) I find it's well in the expected range. If they try to do it while I'm sitting up arguing with them about the right way to do it,though, it's through the roof--hmmm, I wonder why??!!!
Binney
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Comparison of Blood Pressure Measured at the Arm, Ankle and Calf
http://www.ncbi.nlm.nih.gov/pubmed/19032301
Generally, BP readings taken in the leg will be higher than those in the arm. Discomfort is less in the ankle than the calf so ankle BP may be preferred. I still continue to use wrist BP readings for all my medical office visits. Hopefully, there will one day be a non-invasive method for taking BP that will better minimize LE risk while also avoiding potential complications related to leg BPs.
Below is a very detailed medical article studying NON-INVASIVE continuous monitoring of BP (mean blood pressure), HR (heart rate), CO (cardiac output), and SV (cardiac stroke volume). The Nexfin finger cuff system referred to in this study is currently designed for professional use in diagnostic, outpatient, inpatient and acute care settings. If this technology becomes more widely available and accepted for its accuracy, I suspect it may ultimately be followed by a more compact and portable consumer based product.
Noninvasive continuous hemodynamic monitoring
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3391359/
Nexfin
http://www.bmeye.com/products/products-nexfin/products-nexfin-features
There are a few basic finger cuff blood pressure units available now for consumer purchase but I am not aware of their brand/feature set or reliability.
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Thank you ladies. Really interesting Linda.
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