Lymphedema Medical Alert

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Anonymous
Anonymous Member Posts: 1,376
edited December 2018 in Lymphedema

I'm going to order a Lymphedema Medical Alert Bracelet. Any advice what to put on it?

I know it should mention Blood Pressure and Needles. What about IVs?

Thank you.

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2018

    Thank you, Jo!

  • gb2115
    gb2115 Member Posts: 1,894
    edited December 2018

    I put no bp or needles right arm. Lymphedema risk breast cancer.

    I have a medic alert and I wear it on the opposite side because I don't like how it makes marks on my skin when I write or use a mouse.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2018

    Thank you gb. What material is your bracelet?

    The one I'm ordering has a Silicone Band. I personally didn't care for several others I looked at, some very expensive. My daughter makes jewelry and I'll eventually have her make me a bracelet.

  • MCBaker
    MCBaker Member Posts: 1,555
    edited December 2018

    Mine says "No vp/bp rt arm". It has a phone number and case number for detailed medical information. I can get online and change it as situations change. I ordered it immediately after surgery, and the cs rep knew what I needed. This is the original Medic Alert company.

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited December 2018

    Yes, I wear MedicAlert bracelet too. The original. I love they have ALL my info. Worth the yearly cost. Mine says No vp/bp lt arm. Plus other info.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2018

    I never heard of MedicAlert. How much does it cost a year?

    I understand that I am low risk for lymphedema but I though I should have one. At 74, I don't have a memory like I used to so it's better to be safe than sorry. I've had my training about lymphedema and my arm has been measured. If I decide to travel on a plane, I will need to get compression sleeve.

  • Spoonie77
    Spoonie77 Member Posts: 925
    edited December 2018

    I had not even thought of this, but it's really something important to put on my list and get taken care of asap. Thanks so much for sharing!

    I second Viewfinder and am wondering if there is a subscription and how that works? Whenever I had thought about medic bracelets before they were just that, bracelets with engraved alert info.

    Fill us in when you get some time. Thanks in advance. :)

  • gb2115
    gb2115 Member Posts: 1,894
    edited December 2018

    I think mine is stainless steel. It's not pretty but it's durable. The purchase comes with a year's subscription, which you can renew or not. The subscription means if EMS finds you they can access whatever medical history you enter into the system. ER staff can do it too, in the event you are unconscious and can't speak for yourself. Can also put them in touch with next of kin.

    I like it because there's no room on my bracelet for my adhesive allergies from Hell. If a quick phone call prevent them from putting dermabond on me, that's worth $20.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2018

    Here is a link for the Medic Alert company. The bracelets are functional but do the job - and I would caution against bracelets that are more fashion oriented - you want something that catches the attention of whatever emergency responder is present, and is not mistaken for regular jewelry. Additionally, I would skip using the word "lymphedema" in a small space on the bracelet, instead use NO IV/NEEDLES/BP and designate which arm. You might be surprised how many first responders do not know what lymphedema is, so being more direct is a better idea. My son is a firefighter/paramedic and I had him survey his station, most of the EMTs did not know much about lymphedema. I have a bracelet from Road ID - it has a pretty good amount of room and I added the caduceus and the bracelet is red silicone - I use this when I exercise. Road ID also has the capability to store medical information for a small fee, although I did not subscribe, just purchased the bracelet with the info. I also have a gold bracelet with a prominent caduceus and the medic alert shape of the ID part conveys the purpose - it is long enough to include the information I need.

    https://www.medicalert.org/

    https://www.roadid.com/products/elite-plus-stainless-pin-tuck-id-bracelet

  • Spoonie77
    Spoonie77 Member Posts: 925
    edited December 2018

    Thanks SpecialK for the info and advice. Surprising that EMT and such do not know what Lymphedema is, yet, they do have alot of knowledge to store in their brains for the everyday emergency response so it's hard to blame em'! I'll give those links a look see. Thanks again!

  • pupmom
    pupmom Member Posts: 5,068
    edited December 2018

    Mine says "No BP/IV/IM." I wear it on my right arm, which is where the nodes were taken.

  • KBeee
    KBeee Member Posts: 5,109
    edited December 2018

    Put it on the affected arm.

    I am a firefighter/paramedic, and if I took that arm for a blood pressure or IV, I would see it there as I am grabbing the arm to put the BP cuff on or look for an IV site...even if you forgot to tell me. If it is on a necklace, I might not see it. Make it an obvious medic alert bracelet, and do not have 10 other watches and bracelets on that arm. It will get hidden by them, and no provider is going to sift through 10 bracelets to see if one happens to be a medical alert tag...... not because we are lazy, but if the situation is that critical that we'd need to know and you could not tell us, we'll be very busy doing and assessing other things to figure out and treat what's wrong.

    I have been in EMS for over 20 years, and even with a mom who had lymphedema from BC, I did not understand the reasons until I was affected with BC (my mom really was not told to avoid that arm for things, nor was my mother-in-law who is also affected). It is not something routinely taught in most EMS curricula for EMTs or paramedics, though I do think it is getting more attention now than it had in the past. I was asked many times to avoid an arm, and always honored it...obviously I still do!

    I have also had many nurses I've had to remind. As much as I would like everyone to just "know", I consider it my responsibility to remind them because ultimately it'll be me who could potentially suffer if a mistake is made.

    Make sure your family members know so they can alert medical personnel as well. The bracelet serves this purpose well. Understand that providers will do everything they can to honor that, but in a life or death situation, sometimes they'll have to use the arm. I can think of only one time in 30 years I have had to do this.

    Honestly, I would just put the info on the bracelet. You probably do not need to subscribe. I have in 30 years of EMS, never called that number to get the info. I am sure others have, but in cases where it would have been helpful, the person did not have a bracelet, and in cases where someone had a bracelet, I always had family there, or their info was in their phone. Remember that you can put emergency health info in your phone and that responders can access it without your phone code with most phones (on mine, you just hit home to unlock, hit "emergency", and then "medical ID" in the corner.) When I have an unconscious person who does not have a bracelet, this is the first thing I'll look for.


    Hopefully this is helpful for some of you.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2018

    Very helpful, KBeee. I have my medical information and ICE information on my phone, that does not need a code to access it. I bought a bracelet that looks like an obvious medical alert, not like jewelry. Thank you for your devotion to helping others!

  • Spoonie77
    Spoonie77 Member Posts: 925
    edited December 2018

    I agree, thanks so much KBEee! That information you shared is all very helpful. :)

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited December 2018

    Thank you!!!!!

    Also with MedicAlert, they have my ICE #,known medical conditions, current meds, PCP name, phone#, blood type, living will, DNR Good things for ER to have if I can't speak.

  • GG27
    GG27 Member Posts: 2,128
    edited December 2018

    I don't know that many women have the problem that I do, I don't have a good arm having bilateral breast cancer with nodes affected on both sides. I work hard at not getting lymphadema again as I had a mild case when I first had surgery.

    I have a very hard time getting my port used for everything and I can't imagine having to wear a medic alert bracelet on both arms. Any thoughts on what I could do? I have a medical alert on my phone which you don't need my password to access. thanks for any thoughts.

  • KBeee
    KBeee Member Posts: 5,109
    edited December 2018

    GG27, I would ask a Lymphedema therapist for advice. Injections can be given elsewhere and IVs can be started in the leg, but blood pressure is trickier.

    If one arm had less nodes taken than another, then that would be the best choice, but I would see what the Lymphedema specialist recommends. My mom has had bilateral breast cancer too. Though I have not had cancer on both sides, I did have 2 nodes removed from that side in a biopsy a year before my BC.... so I am potentially at risk on both sides too, though much lower risk on my L side

  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2018

    I have had bi-lateral nodes removed, ALND on the right side, and have diagnosed lymphedema on that side. I did use my port for blood draws over the six years I had it - until removal in 2016. I have allowed blood draws on the left arm. I am an easy stick and I have had no problems - so far. I also allow BP, but do request it be done manually if possible, not by machine - as it feels gentler, and my PS uses a wrist reader which is nice. For surgery my BP has been on the ankle with a machine. Only offering this info, not advising or recommending this course of action. It has worked for me, but I think everyone has to decide their own risk tolerance coupled with medical advice.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2018

    Special is right - everyone has to assess their own risk tolerance.

    I also was bilateral with serial nodes taken and then ALND after recurrence on the right w/more nodes taken. I was diagnosed with truncal & breast LE and I'm extra cautious to try to keep it from going to my arm (s).

    I do NOT allow ANY BP on the ALND side, but do allow only manual BP on the left side.

    I do NOT allow any sticks on either side. For a blood draws, they have to use my foot or ankle once my port was removed. This is extremely challenging even living by the 3rd biggest medical center in the US. No one is trained to draw blood from a foot. Only one in three MAJOR hospitals would even discuss it and I have to go to the head of the blood donor center. This of course applies to anesthesia too - like for a colonoscopy.

    For a flu shot or other injections, I have to find someone who will give it in my butt or thigh. More difficult than you'd think.

    I ordered free LE wrist bands from Penninsula BioMedical. Their link is below. I'm not sure they are still offering the free bands but there is good info & you can buy a wrist bracelet. http://www.lymphedema.org/

    And whenever I have to have anesthesia - I write all over both arms with magic marker - no sticks, no BP, no IV. Of course my grown son thinks I'm nuts, but I am NOT even a little risk tolerant.


  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2018

    BTW - for those of you who are new to LE, this is a wonderful site with lots of recommendations. It was created with much input from several caring BCO ladies.

    https://www.stepup-speakout.org/


  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2018

    Lots of good information here! Thanks for sharing.

    I have to remember that about the magic marker. I remember many years ago reading a news story that a man had his wrong leg cut off. Can't been to careful. We have to double check and watch out for our own selves.

  • KBeee
    KBeee Member Posts: 5,109
    edited December 2018

    Minus Two, I think you are very wise to do that. I do not know why health care folks are so afraid to start an IV or draw blood from a leg. Frustrating. Blood does not just circulate through our upper body!

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