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GRRRRRRRRR I HATE LE..........

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Comments

  • vargadoll
    vargadoll Member Posts: 1,942
    edited December 2017

    I have the pump and use it for a hour each night. I actually fall asleep while I'm hooked up most nights. It does have lots of hoses and does not look high tech at all. My insurance will cover as long as the paperwork will clear before the end of the year. There is a 30 day trail period then the company bills. I'm right in the edge of year end with that. If it doesn't make it on this year I will pay approximately $28 a month for 10 months insurance will pay the rest. I will look when I get home to see the total cost. Tamoxifen leaves me with memory fog


  • minustwo
    minustwo Member Posts: 13,418
    edited December 2017

    Binney - Is it possible to order them directly from WearEase and have them covered? Even if that won't work, the people up there are so nice they may at least be able to tell you the name of another vendor who would be willing to process the order.

    Saw MO today for my 6 month reviews. He's very involved in the San Antonio Breast Conference. Since it was this month, I asked him if there was anything new on: 1) LE, and 2) neuropathy. Unfortunately the answer was no to both. Maybe some things in the work for prevention at the strart as other people begin this journey.

  • hugz4u
    hugz4u Member Posts: 1,818
    edited December 2017

    minus thx so much for asking your doc about conference and reporting to us. Yes we all need to be looped in on le things.

  • homemom
    homemom Member Posts: 845
    edited December 2017

    I need a compression t shirt - it tends to collect in my arm pit and below. I would love to get the pump, it did a lot in just the 10 min the girl had it on me. The night time garment was I believe $1,500 so I shudder to think what the pump is. I'll check with my new insurance. Do they charge you monthly for a service or something??

  • hugz4u
    hugz4u Member Posts: 1,818
    edited December 2017

    homemom. Get a men's under armour compression tee a size or two smaller. You can wear inside out if the seams bug you,but actually there ok on me and I have sensitive skin. They work pretty good. Under 40 bucks I think.

    Must be men's because women's sleeves are cap and not long enough like men's.

    Yup vest not cheap. Mine still isn't a perfect fit after altering. It wants to creep up.

  • brneyegrl6608
    brneyegrl6608 Member Posts: 16
    edited December 2017

    I have the pump and my insurance paid the entire amount. Also, thanks for the tip about the men's compression shirt. I have a few shirts that do not work at all so I have up. It was too expensive to get the vest.

  • glennie19
    glennie19 Member Posts: 4,833
    edited December 2017

    After I recover from my prophy MX,, I have to get back to looking at compression tees and cami's again. they were impossible while I still had Righty,, just did not work. so now that I'm completely flat, I hope to find some other solutions for my truncal issues!

  • hugz4u
    hugz4u Member Posts: 1,818
    edited December 2017

    Glennie. Goatheletic designed a compression shirt for us. Try googling. I prefer under armour though because ofits wickaway qualities.

  • minustwo
    minustwo Member Posts: 13,418
    edited December 2017

    Glennie - I like WearEase. They are great about returns & have regular sales.

    http://www.wearease.com/


  • PauletteK
    PauletteK Member Posts: 1,279
    edited December 2017

    Homemom - I got flexitouch pump and I like it. It works great for me. I had mild Le and it got my fluid out completely before I started radiation. I checked my insurance bill, it is a very expensive equipment but my insurance ended to pay $650 for the pump. I didn't need to pay any because I met my deductible for this year. I got my MO to write a letter for me and insurance approved the pump. Maybe you could try it that way. My PT also told me if you need to buy one out of pocket, you can get a refurbished machine in lower cost

    Radiation flares up my Lymphedema, I can't use the pump and finally my RO agreed let me use the pump on the weekend, meanwhile I need to do manual to move my fluid.

  • hugz4u
    hugz4u Member Posts: 1,818
    edited December 2017

    Glennie. I posted wrong website.It's goathleticapparel.com. Wearease is fabulous to!

  • glennie19
    glennie19 Member Posts: 4,833
    edited December 2017

    Thanks for the compression tee ideas!! Will start researching them in January.


  • PVM
    PVM Member Posts: 27
    edited December 2017

    Ladies wanted to ask for your opinion/advise on what you would recommend for a compression sleeve. I got a Jobst 15-20 & find its not as soft & not sure about the quality but wanted to ask your opinion. I am trying to wear it when i go for long walks or if i am doing something repetitive to get used to it but to be honest i have not worn it too many times. I am trying to be proactive & keep LE away & know that it does not always guarantee that LE will stay away. I am hoping some of you lovely ladies weigh in with some suggestions.

  • marijen
    marijen Member Posts: 2,181
    edited December 2017

    I got a Jobst 20-30 and it's not so nice. It has pilled up awful on the outside, I wear a lot of sweaters. So I turn it inside out. Next time will get a Juzo. I also found a good sleeve at Amazon for $11.25. But order one size up, the first one was too tight so they refunded me, I didn't have to send it back, and I ordered a new one. Plain beige because I wear long sleeves most of the time.

  • gmafoley
    gmafoley Member Posts: 5,978
    edited December 2017

    Marijen, they all pill - I love the juzo sleeves though. That is the only kind I use at this point. I have short arms so it is sometimes hard to find a sleeve that fits.

  • homemom
    homemom Member Posts: 845
    edited January 2018

    Thanks for all the responses! I can't seem to get the fluid out of the upper arm area, so then the forearm can't drain.I think the compression shirt will move it out of my side and armpit and then I can work on the forearm.


    Has anyone know of anyone who had the LVR surgery? They took so many from me that I doubt that will help. I have wrapped my arm and kept it on for two days, wear the night time garment most of the time and a sleeve when I can. I'm in sales and I avoid it sometimes. I think the flexi pump is my last chance!

  • hugz4u
    hugz4u Member Posts: 1,818
    edited January 2018

    homemom. I'm waiting for more experiences and outcomes before I try the surgery. Of course they don't even do it in my country yet. Ok I'm a newbie on this but I don't think it matters how many nodes were out because if they do bypass surgery they will use nodes from other areas in your body. What matters is if you have had le a long time and how much damage to your arm there is. They say newer patients have better outcomes.someone correct me if I’m wrong!

    You need to wear sleeve and hand garments every day if your swelling. Yup...grrrrr....there ugly, unprofessional looking and everyone notices but there so necessary to wear daily to contain the swell and not get bigger. I wear mine 10-12 hours a day and take off in evening when I'm not physical. If I wear them too much I lose my touch sensation in fingers. ( make sure you touch different mediums to resenticise your hands when garments off) With all I do in self care this amount of time works for me but we are all different.

  • vlh
    vlh Member Posts: 773
    edited January 2018

    How difficult is it for you to don your compression sleeves? I have exceptionally large upper arms exacerbated by 100 lb weight loss with the adjacent loose skin. When I struggled to tolerate the over-the-counter sleeves, I ordered a custom sleeve. Unfortunately, it's equally difficult, if not more so, to get up over my upper arm because it's a sturdier fabric with less give. The various adaptive devices / "slippies" all seem to target getting the sleeve over the lower arm and that's not my issue. YouTube videos, including Juzo's, make the upper arm positioning look so effortless while I hit myself in the face again today trying to get the sleeve higher than my lower bicep.

    It doesn't help that my grip isn't great due to neuropathy. I know there needs to be compression to be effective, but am I just being a wuss wanting a sleeve to be loose enough that it doesn't take all my willpower to face the darned thing?

    I see my LE specialist soon to see if the pump is helping. I'm thinking I'll take the sleeve along and show her how challenging it is to get on and solicit her input. I'm just wondering if anyone here has had similar issues.

    Lyn

  • MRock
    MRock Member Posts: 34
    edited January 2018

    VLH, I had the same problem, then I bought this Ezy-As Armsleeve applicator:

    https://www.brightlifedirect.com/ezy-as-stocking-and-armsleeve-applicator.asp

    I bought it from Brightlife, but you may be able to find it elsewhere, or locally, for less.

    I bought the RED one, that you slide on with your other hand, not the yellow one you clamp on a table.

    Here's a video of how to use it:

    https://www.youtube.com/watch?v=yvZ-2dAyy_o

    but I actually push the applicator a bit further up my upper arm than this woman has, then finish off with a green donning glove to help me on the last bit - so much easier than by hand.

    I hope that helps! But I'm sure many others will have good suggestions, too. Gentle hugs to you


  • hugz4u
    hugz4u Member Posts: 1,818
    edited January 2018

    what ever you do don’t look at what your doing as you get to top of sleeve. You will punch yoyrself in nose or worse some here detached their retinas.

  • binney4
    binney4 Member Posts: 1,466
    edited January 2018

    I'll second MRock's recommendation on the EZ-as donning device (I use the red one too)--it's sturdy, easy to use, and I use it all the way up my arm (except for the elastic band, which I simply turn up by hand. I've used mine for several years and even take it with me to the fitter when trying on new garments (and the fitter now stocks them, too!) I also use it to help my neighbor don her leg stockings. When I first got it I thought it might ruin my garments by stretching them that way, but it absolutely doesn't.

    Looks like BrightLife has a good price on it, and their customer service is wonderful. Hope you'll soon be donning your sleeves with a whole lot less frustration!

    Hugs,
    Binney

  • gmafoley
    gmafoley Member Posts: 5,978
    edited January 2018

    I third the idea above ;-)

  • vargadoll
    vargadoll Member Posts: 1,942
    edited January 2018

    I use a gardening glove that is kind of grippy. I turn my sleeve down so it' about half way. Slide my arm in to my elbow then use my left hand with a gardening glove. It grips the sleeve and slides it up without stretching it out.

  • minustwo
    minustwo Member Posts: 13,418
    edited January 2018

    I do the same as VargaDoll, but I turn my down even more than half way & then use a gardening glove.

  • PauletteK
    PauletteK Member Posts: 1,279
    edited January 2018

    Hugz, what kind of garden gloves do you have? I can’t find any heavy duty ones now, most of them are fabric mixed with plastic, I finally found one got some suede. I’m hoping to find a better one so I can work with my roses, trying to get ready for spring time.

    Will be finishing my radiation next Monday, I have mixed feeling now. Little lost and little happiness. Did you go though this also?


  • minustwo
    minustwo Member Posts: 13,418
    edited January 2018

    Paulette - a friend gave me a pair that come up to the elbow. They are a composite material but feel like suede. I think she got them at Vermont Country Store, but maybe Home Depot. Best thing I received. I googled 'long sleeve garden gloves' and came up with all kinds of selections & prices.

  • vargadoll
    vargadoll Member Posts: 1,942
    edited January 2018

    PauletteK- I felt very lost! It was almost a now what??? After months of appointments and checkups and Dr running here running there radiation everyday for 5 weeks I had to find my new normal again! Now it's therapy two days a week for the lymphedema. This stuff has been worse than radiation. It's nice to know there's a place you can go where people understand. Hugs!

  • hugz4u
    hugz4u Member Posts: 1,818
    edited January 2018

    Paulette. I feel varadoll took the words right out of my mouth.

    I have leather gloves that reach elbows. I think they are Laura Ashley brand I picked up at discount store years ago. I rarely use those as I removed almost all prickly plants from yard and we really don't grow good roses here. To damp.

    I use mens Costco blue disposable (nitro i think they call them ) gloves. There for working on autos etc and other activities and are stronger than medical disposable. Some times I use those to for weeding.

    I can't use regular garden gloves with material and rubber on outside. Too thick they are! Just watch what your weeding thru, they don't protect much. I don't have to much sharp stuff in yard left though.

  • PauletteK
    PauletteK Member Posts: 1,279
    edited January 2018

    I tried to say I can’t find heavy duty garden gloves, I still have chemo brain 😂😂😂😂 I should re-read what I typed. I went to Home Depot I can’t find long elbow gloves. I might do some more searching. I trimmed all my roses, I’m on my last week of radiation so I don’t think I should do too much garden works. I wait couple weeks then I need to fertilize the yard. I don’t have a big garden so it won’t take too long.


  • hugz4u
    hugz4u Member Posts: 1,818
    edited January 2018

    Ok you take it easy. Garden can wait. Rads makes you tired and so your body needs some rest to repair. Take one day at a time.