My lymphatron trio

rjjj
rjjj Member Posts: 1,822 Member
edited March 2014 in Breast Cancer #1
good-morning my beautiful sisters. i am typing with one hand so excuse errors. i'm wondering if any of you have tried the lymphedema pump. it is a little machine with a sleeve, it works on the line of a blood pressure cuff, pumping fluid by pressure massage back into the lymph system where its supposed to be, i finally got mine yesterday.

Physical therapy had messed up 3 wasted apt.'s by not having the right size etc. (one time not even the plug-in)And basically had to learn how to run it with me. i guess they felt bad about it, as they gave my hubbie and me a 50$ gas gift card and a free dinner in the cafeteria.

they sad it was mild..that severe lympedema is real ugly. my swelling did go down but it takes 1-2 hours per day twice a day. (oh well guess that means i will have alot of time to type with one hand and talk to you all) they also said flying makes it bad..i love flying to colorado to spend time with my daughter. and was planning on going to stay with her while i do my 6 wks of rads. i also heard that radiation makes lymphedemia worse.

My surgeon said since he had taken 23 nodes (6 pos.)was most likely the cause, and that he had cut nerves being the cause of my lack of feeling in places and the pain in my arm. i am a cna and this kind of messes up that career. i can go into activities dept. but i am also
wondering if i could qualify for some sort of disability even if temporary?
i hope you are all having a good day. thanks.
jackie

Comments

  • mmontero38
    mmontero38 Member Posts: 1,510
    #2
    Jackie, I haven't had
    Jackie, I haven't had lymphedema yet so I can't tell you from experience, but reading the posts on the boards, the pump will work the fastest in lowering the swelling. I know it's time consuming, but it does work. Also, the exercises the therapist makes you do should help with the swelling. For flying, the doctors usually recommend compression sleeves and drinking lots of fluids before, during the flight and after. But your dr, will tell you better than I. Keep us posted on how you make out. Hugs, Lili
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    #3
    So glad you have the right pump finally
    Jackie, thanks for letting us know you're finally getting relief for the lymphedema. Joe and I have been thinking of you and praying you would get the right treatment soon. Also glad that the staff recognized their fault and tried to make amends. Hope y'all splurged in the cafeteria!

    I don't know much about disability, but I would certainly think that the cut nerves and lymphedema would warrant benefits. My usual first thought is to call the ACS. A rep should be at least able to direct you to the appropriate government office.

    I hope you won't give up hope on going to CO. Others here will most likely have some thoughts on flying and lymphedema, as well as your doctor and other sources. It may be more doable than it seems right now. That is my wish for you, anyway.
  • rjjj
    rjjj Member Posts: 1,822 Member
    #4
    Moopy23 said:

    So glad you have the right pump finally
    Jackie, thanks for letting us know you're finally getting relief for the lymphedema. Joe and I have been thinking of you and praying you would get the right treatment soon. Also glad that the staff recognized their fault and tried to make amends. Hope y'all splurged in the cafeteria!

    I don't know much about disability, but I would certainly think that the cut nerves and lymphedema would warrant benefits. My usual first thought is to call the ACS. A rep should be at least able to direct you to the appropriate government office.

    I hope you won't give up hope on going to CO. Others here will most likely have some thoughts on flying and lymphedema, as well as your doctor and other sources. It may be more doable than it seems right now. That is my wish for you, anyway.

    Moopy
    thank you to you and Joe for your prayers and concern. I have been doing the pump but it seems like about an hour or two of using my hands and its puffy again. I am going to try putting the sleeve garment on after and see how long it lasts. That will limit also what i do such as dishes etc. (one way to get out of doing them lol) I feel pretty useless though my husband and son are remodeling my house and i feel bad not to be able to help with even the little things. I know this is their way of trying to "fix things" for me and is really very sweet. But i feel like an ingrate just sitting like a bump.Everyone notices my hand when i go over to work and wonder if i should be there or go put it up! I'm tired but i'm also tired of not doing much.

    I hope you have a nice Sunday and go eat ALOT for me today..ok Moopie i'm sure i will gain whatever you eat!! lol. My best to you and Joe
    Jackie
  • cruf
    cruf Member Posts: 908
    #5
    rjjj said:

    Moopy
    thank you to you and Joe for your prayers and concern. I have been doing the pump but it seems like about an hour or two of using my hands and its puffy again. I am going to try putting the sleeve garment on after and see how long it lasts. That will limit also what i do such as dishes etc. (one way to get out of doing them lol) I feel pretty useless though my husband and son are remodeling my house and i feel bad not to be able to help with even the little things. I know this is their way of trying to "fix things" for me and is really very sweet. But i feel like an ingrate just sitting like a bump.Everyone notices my hand when i go over to work and wonder if i should be there or go put it up! I'm tired but i'm also tired of not doing much.

    I hope you have a nice Sunday and go eat ALOT for me today..ok Moopie i'm sure i will gain whatever you eat!! lol. My best to you and Joe
    Jackie

    Compression Sleeve
    Hi Jackie! It is very important for you to put your sleeve on immediately after using the pump as this should keep swelling down to a minimum. Without the sleeve, there is nothing to keep the swelling down and that's why it swells up again. Your lymph system needs help and the combo of the machine and the sleeve should really make a difference.Check with your PT> I'm surprised they didn't tell you that! Good luck! Let us know how it works! HUGS!! Cathy
  • rjjj
    rjjj Member Posts: 1,822 Member
    #6
    cruf said:

    Compression Sleeve
    Hi Jackie! It is very important for you to put your sleeve on immediately after using the pump as this should keep swelling down to a minimum. Without the sleeve, there is nothing to keep the swelling down and that's why it swells up again. Your lymph system needs help and the combo of the machine and the sleeve should really make a difference.Check with your PT> I'm surprised they didn't tell you that! Good luck! Let us know how it works! HUGS!! Cathy

    Thanks Cathy
    That only makes sense. i am surprised that they didn't tell me this also. well maybe not since they have messed up everythng else so far. i didn't think that this was such a uncommon problem!i will try this today and get back to you. thank you for your very useful info. do you know if this swelling goes away at times?
    jackie
  • divablu
    divablu Member Posts: 75
    #7
    lymphedema
    I had 21 lymph nodes removed and 12 of them were positive for cancer.

    I have not had a problem with lymphedema, but I worked on renewing my range of motion after my mastectomy. Just by moving the arm, lifting it over my head, keeping it moving.

    I have numbness in the left arm where the lymph nodes were taken, but I don't feel the numbness will restrict my use of the arm.

    I have just had 4 radiation treatments, and lymphedema is a side affect of radiation. There may also be some restriction on the range of motion. I'm planning on keeping my arm moving and stretching to avoid any lymphedema. Hope this works!

    Try to move the arm. Ask the physical therapy people if there is some kind of exercise you can do. My radiation doctor said that they sometimes suggest that women reach out and straighten your arm, put your hand flat on the wall and try to inch the hand up the wall, and this will be a gradual stretch of the area.

    Always an experiment!

    Keep going!
  • rjjj
    rjjj Member Posts: 1,822 Member
    #8
    divablu said:

    lymphedema
    I had 21 lymph nodes removed and 12 of them were positive for cancer.

    I have not had a problem with lymphedema, but I worked on renewing my range of motion after my mastectomy. Just by moving the arm, lifting it over my head, keeping it moving.

    I have numbness in the left arm where the lymph nodes were taken, but I don't feel the numbness will restrict my use of the arm.

    I have just had 4 radiation treatments, and lymphedema is a side affect of radiation. There may also be some restriction on the range of motion. I'm planning on keeping my arm moving and stretching to avoid any lymphedema. Hope this works!

    Try to move the arm. Ask the physical therapy people if there is some kind of exercise you can do. My radiation doctor said that they sometimes suggest that women reach out and straighten your arm, put your hand flat on the wall and try to inch the hand up the wall, and this will be a gradual stretch of the area.

    Always an experiment!

    Keep going!

    this is the thing Diva
    i have been VERY faithful with all of my exercises and stretches. my surgery was in dec. and this just started about 3 wks ago. it seems to flare up with overuse also. i wonder what is the dif between thrombitis and lymphodemia i believe thrombitis is a clotting of the blood..and they did do a ultrasound and no clots. And i'm really hoping radiation doesn't make it worse. thanks for the info and the encouragement. hope your having a good one.
    bless you.
    jackie
  • cruf
    cruf Member Posts: 908
    #9
    rjjj said:

    Thanks Cathy
    That only makes sense. i am surprised that they didn't tell me this also. well maybe not since they have messed up everythng else so far. i didn't think that this was such a uncommon problem!i will try this today and get back to you. thank you for your very useful info. do you know if this swelling goes away at times?
    jackie

    lymphedema
    Hi Jackie!I don't know if it ever goes away completely but with using the machine, wearing the sleeve and doing the exercises and being careful not to overtax the arm, I think you can keep it under control. You also have to be careful not to cut it which could cause infection because the lymph system isn't working properly anymore.I think you just have to use common sense . Try not to focus on it constantly and live life to it's fullest. Anything can happen to anyone anytime so we just have to enjoy everyday to it's fullest ! Keep in touch. HUGS!! Cathy

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