Hospital Alert Systems for Lymphodema Arms
If so, what policy/measures did that hospital use and or how did you make sure your arm was not compromised?
When I had my mastectomy and axiliary lymph node clearance a year ago, the local private hospital used a pink armband to denote the lymphodema arm that was not to be used for blood pressure cuffs or needles to take blood.
During my recent hospitalization in a large public hospital for the secondary brain tumor resection, I informed the nurse that my right arm was not to be used for bloods or BP's. (Something that those of you who have had axiliary clearance of lymph nodes will have had drummed into you by your physio and medical team).
I was told that they do not use the arm band alert system for either allergy alerts or lymphodema arm, in case the band comes off. Instead they write alert in patient notes and rely on that. I did suggest she write on my affected arm, which she did but high up near the shoulder where it was covered by my gown.
My sister brought in her own permanent marker and also wrote "no BP's or bloods" on my affected forearm where it was more prominently visible.
It was surprising the number of times, nursing and medical staff still tried to use the arm and questioned why not. Especially when the "good" arm was inundated with cannulas, arterial lines and the like. The blood nurse had fun trying to find a new vein every day on an already heavily utilized and bruised "good" arm.
I even resorted to hiding my lymphodema arm under the blankets and leaving the "good" arm on top while I slept so that nurses would use that for their regular obs. It did not help that my "bad" arm was closest to the door.
Has anyone else had a similar experience?
Do hospitals need to unify a policy with regard to this issue?
Comments
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Very good questions. I am seeing my surgeon on the 18th for a follow up and I will ask him re the proper procedures. My oncologist is ok with BP being done on my Lymph arm - provided it is done manually not with a machine, and provided I am healed from surgery. Blood however is to be drawn from the other side. The hospital I attend uses arm bands and ankle bands upon admittance. Every time I have been in, they check both my arm and ankle to make sure they match and then they check the chart for notes. They are colour coded and red signifies lymphodema.
After my breast surgery I did have to stop the young nurses from accessing my surgery side - it was closest to the door. I am hoping they have learnt now.
I am going to have a quick read of the lymphodema literature from the Cancer Council, it may also be worth a phone call for clarity.
Take care.
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I was told that my hospital had changed procedure, and they now refer to the notes and patient instead of relying on arm bands (they did still use red to denot allergies, but instead of 2 a white with your name etc on it and a red for allergy they put your name etc on the red one.
When I had my surgery (mastectomy) they put a pink on on that side and same when I had my port (I guess becasue they can't ask you).
I got 2 free reusable ones form the, and they USA (free to get and free postage) and they should work. They look like the normal hospital ones but they have a reusable press stud.
If you are interested you can get them from http://www.lymphedema.com/alertform.htm I got 2 becasue I thought I was having bilat done first, but it was decided to do cancer side first then prophylactic later, after I finish chemo. Make sure you choose arm though becasue they do leg ones too (thay are green), and if you want 2 (becasue you have had bilateral or to have a spare etc) click yes for bilateral. Mine came trhough quite quickly, only took about a week.
At least this way you can have your own pece of mind that there is a visual deterent there if you ned it, like when in surgery, groggy, med'ed up or asleep etc. It is no big issue to the staff if they use the wrong arm on you, but you on the other hand can suffer extensively and for the rest of your life and this seems to me a small thing to do, for another level of protection.
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Hi , I had a right sided lumpectomy..12 nodes removed.. one had cancer..so chemo and radiation in 1998.
I had a left lumpectomy and sentinel node biopsy in 2003, and am wary of overusing my right arm. ( it does swell a bit when I overuse it ). I have had laser also and it helped a lot to help settle things down as quick as possible. I do manual lymphatic drainage daily and " pace" myself, not doing too much in one day etc. I think it is better to go " gently, carefully, slowly ".. initially, err on the side of caution. Let the body heal after treatments and surgery, for 6 to 12 months etc.
It is an awful shock to have a diagnosis of BC. It can take time to adjust, especially with all the treatments etc.
When I travel on a plane, I take time to get to the airport, and try not to rush, plus use a bag with wheels, so I do not have to lift for extended periods of time.
After chemo and early menopause,( with flushing and vasodilation several times a day,) my veins are a bit more distended in my arms. I am extra careful now.. but I did have a period of DENIAL and not knowing HOW much was too much..when using my arms. Listen to your body, and rest when you have to.
I prefer to have MANUAL BP taken on my left arm, and not on my right side at all.
I did have an armband and on my right arm when I had surgey post BC, but I forget what colour it was. I think I also had written on my right arm: NO BP. Kathy.
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Thanks for the link ShazInoz,
I'll look into getting some of those armbands ready for next time I go to hospital.
Cheers Sonia0 -
Hi Serenity11,
My hospital used the 2 normal white name bands (arm & leg) for ID, but don't use red alert or any other alert ones anymore.
I guess until there is some sort of uniform policy/protocol out there, we all have to hide our arms under the covers, or hope they are not closest to the door!
Cheers Sonia0 -
Thanks Mich,
All good tips and advice for those of us with lymphodema limbs.
Sonia0 -
I went in for a reconstruction recently, so was in hosp(public) for a week,
and I dont think any of the nurses/other attending docs read the chart regarding non-use of my of left arm with lymphodema.
I basically told everyone, every day, as they walked around the bed to my "free" arm, it could not be used - my other arm had 2 cancula's so could not be used for blood pressure either.
I did have white sticky tape with texta writing - of "Do Not use this arm" high tech LOL
But I feel lucky i was alert or woke up each time, to stop them using it.
I had blood pressure done on my leg (calf) - weird but better than my arms. your BP is higher, but they are just looking for daily consistancy. Alot of staff had never done blood pressure on a leg, so they were all learning something new.
and glad that I can let bcna ladies know they have this option too.
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I went in for a reconstruction recently, so was in hosp(public) for a week,
and I dont think any of the nurses/other attending docs read the chart regarding non-use of my of left arm with lymphodema.
I basically told everyone, every day, as they walked around the bed to my "free" arm, it could not be used - my other arm had 2 cancula's so could not be used for blood pressure either.
I did have white sticky tape with texta writing - of "Do Not use this arm" high tech LOL
But I feel lucky i was alert or woke up each time, to stop them using it.
I had blood pressure done on my leg (calf) - weird but better than my arms. your BP is higher, but they are just looking for daily consistancy. Alot of staff had never done blood pressure on a leg, so they were all learning something new.
and glad that I can let bcna ladies know they have this option too.
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I had the appt with the breast surgeon and the physio yesterday. Breast surgeon prefers no action on the surgery side as does physio. Although I have only had 8 nodes removed so it is not considered a large removal area the repair of tissue will take up to 12 months possibly longer depending on chemo routine.
I am not to carry my handbag on my surgery side for at least 12 months, nor am I to pick up large weight (more than 10kg) with that side. My stretching exercises have been increased and I can use weight up to 2kg to keep tone and strengh.
Apparently skipping and bouncing or dancing are really good movements.
Interestingly the physio mentioned that Canada is leading research and development on the lymphodema front. She also mentioned that up to one third of breast surgery patients don't do their lymphodema exercises - why wouldn't you?
Anyway, was very helpful discussion and physio session.
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The lympoedema physio did say that it doesn't hurt to have the occasional blood pressure taken on the bad arm but if it is a blood pressure testing that is on continually then definitely not to use that arm.
Calf is a good idea because what do you do if double mastecomy and nodes removed on both sides?? I am very thankful that isn't me but there are lot of pink ladies out there who are probably in that situatioin, so calf is a way to go I guess.
Mich x
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The lympoedema physio did say that it doesn't hurt to have the occasional blood pressure taken on the bad arm but if it is a blood pressure testing that is on continually then definitely not to use that arm.
Calf is a good idea because what do you do if double mastecomy and nodes removed on both sides?? I am very thankful that isn't me but there are lot of pink ladies out there who are probably in that situatioin, so calf is a way to go I guess.
Mich x
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I had mine done on my leg the whole time I was in hospital post mastectomy (14 days), due to left side out - mastectomy, right side - cannula and due to nerve condition I have. I use my right side sometimes and leg other times, depending. For my port surgery, in theatre it was leg, once out of recovery it was Right arm
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