Sunday, March 13, 2011

Living with lymphedema

Lymphedema blows. Don't get me wrong, I'll take it over cancer any day. But, having lymphedema does suck as it interferes with life every single day. I am not able to lift or do repetitive motion with my left arm without fear of causing it to blow up like a balloon. I can't have blood pressure checks or needles in that arm EVER. I have to wear a compression sleeve 24/7 and at night I wear a special padded sleeve with a compression sleeve over top of that to help aid in channeling the fluid up my arm and down my side.  I have to sleep on my back or my right side - if I fall asleep on my left side or roll onto that side my arm and hand will go numb within a few minutes and that could also lead to fluid build up.  I have to take my wedding rings off before bed and before any type of exertion or exercise so that if I flare up they won't have to be cut off of me if the flare up is really bad.  Edited to add: I also can not get into a sauna, steam room, or jacuzzi because the high heat involved is a risk factor for flare-ups for both those with lymphedema and those at risk for it. That's a bummer because I used to enjoy occasional spa visits - now I have no reason to go to one - the money I save by not going to a spa only gets spent on lymphedema management garments and therapy. ;(

When I have a flare-up, my arm swells up and I can't just carry on as usual - I have to see a lymphedema physical therapist trained in manual lymphatic drainage massage 3 times per week and get bandaged in stiff bandaging (with foam underneath) for a 2-3 week period - bandaged from knuckles to shoulder with several short width bandages that are put on and taken off only for bathing and then put back on again. This has to be done to get the excess fluid out of the arm as much as possible as stagnant fluid can cause infection and can harden up.

Why do I have this? Because I had 17 lymph nodes removed during my bilateral mastectomy and the remaining nodes and channels were damaged by radiation therapy so my left arm has no healthy channel for filtering and dispersing the fluid that naturally occurs and moves through the arm and through the lymph nodes and vessels to the rest of the body. About 1/3 of women who have lymph nodes removed will develop lymphedema. It can happen at any time - 5 days or 5 years or even decades after surgery - even if you take all the recommended steps to try to prevent it.  If you have radiation therapy as part of treatment, you become something like 3x more likely to develop lymphedema because of the damage radiation does to nodes and channels in the radiated areas.

Since I have to wear a compression sleeve around the clock, I have to have several of them. They only last 4 months with daily wear because they have to be washed daily as the natural oils from the body break down the elasticity of the compression fabric.  They cost, on average, $75 per sleeve. I keep 3 sleeves at a time, and because they are sold by specialty medical supply stores which generally don't participate in health insurance groups they are almost always out of network and subject to the out of network deductible that I never fulfill because the rest of my care is always within network. 3x$75, 3 times per year, plus the sleeve and padding and bandages for night time wear and the arm garments alone run me $1000 per year out of pocket.  The therapy, when in network, is $30 copay per session, so flare-ups (I generally have 2-3 per year), costs me another $1000 out of pocket per year.

I haven't even mentioned the "gunky" feeling of having my left arm and left breast be swollen and bigger than my right side all of the time. For me, that's the worst part of lymphedema. It causes aching and a general yucky feeling all of the time.

I am incredibly lucky that there is a wonderful lymphedema therapist within a 40 minute drive of my home - she's the best in the state and trained by the most prestigious school for lymphedema therapy and management. She is a delight to work with and very compassionate and understanding.  She has shared so much knowledge with me to help me understand the lymphatic system and the types of treatment that are effective and the types that some PT businesses use which are harmful so I'll know what to avoid too. Love you, Richelle!!! :)

I'm also very lucky that this is effecting my left arm and not my right side which I rely on for writing and other tasks where I favor my right hand/arm.  Praise the Lord!

Anyway, I brought this up for a couple of reasons - first, a few friends of mine are just beginning their breast cancer journey - surgery, treatment, etc. - and they'll need to get up to speed on their risk for lymphedema and how to prevent and/or manage it if it occurs, and secondly it is time for me to replace all of my sleeves (wallet is weeping LOL) so it is on my mind more than usual this weekend. 

If you would like to learn more about lymphedema, there's a great organization - the National Lymphedema Network - and their website is: http://www.lymphnet.org/

Feel free to comment here or email me with any questions about this. It'll be part of my journey for the rest of my life now that I have it (mine is considered irreversible but in some, though not all, patients if it's caught early enough it can be reversible). 

I hope you are having a blessed Sunday!

Love,
Julie

13 comments:

  1. Julie, your post was very informative and interesting! Our lymph system is obvious one of those silent things that just is working right away and we don't know about it.

    I hope you continue to cope well and that things improve.

    All the best --

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  2. I'd never even heard about lymphedema before I was diagnosed, and like you, I've been lucky to find a fantastic specialist who keeps me sane and keeps the balloon arm at bay. Great post!

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  3. That was really informative. Not many people talk about lymphedema and that is a shame because having the right kind of support can really make a difference. I hope that other men and women suffering from its effects find this post- I think it will be very helpful.

    Best wishes,
    Lauren (www.breastcancerregistry.org)

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  4. Hi Julie,
    Your story is absolutely inspiring, especially the undying faith you have held in the face of every obstacle. Would you be interested in telling your story to a larger audience?
    I'm a journalist in LA, and I write real life stories for UK magazines. I think my editors and readers would love to hear your story. If you'd like to be interviewed for a magazine article, please let me know!
    You can email me at davila.angelica@gmail.com or call my office at (310) 474-4343.

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  5. Hi Julie,

    I certainly can relate and I am so sorry for your suffering. I pray you will have less and less flair-ups. So few doctors seem to be doing anything about this, which I hope to change. Sure there have been advances in the treatment of breast cancer, a dangerous but in the case of localized breast cancer, an acute condition. Wouldn't one think doctors would be more concerned about the chronic condition that is lymphedema? This can also be quite dangerous if left unattended! We are just blessed to have descent insurance and the ability to afford copays for treatment.

    I had 21 lymph nodes removed on the left side also, and thank God I am right-handed, although ambidextrous so I really have to concentrate. I wish there had been mention of lymphedema at some point in my treatment, especially the surgeon knowing she took all but four of my nodes. There may have been a casual mention, but no warnings AT ALL. Women in our situation should be told right away: DO NOT STRESS YOUR ARM PERIOD - pretend it is broken or your life will be forever altered!!! That be the case, I could have at least staved off the onset and not be limited at such a young age. I am only 46 years old and now unable to lead a normal life because I was not told about this horrible condition. Considering the number of lymph nodes removed, I should have been told I had a 100% chance of developing it and given materials on what not to do!!!

    So what happened? I got a delivery of hardwood floors on a pallet with only one driver and no help. I gave it a few hard shoves, next thing I know my hand and arm are unrecognizable due to swelling. Now I have to wear a sleeve 24/7 for the rest of my life after 3 months of therapy.

    You, and the women who have already posted here, have inspired me to take action. How about a Relay for Life for Lymphedema!!! Honestly, I'd take a mastectomy and chemo 10 more times over having to live with this for the rest of my life.

    THERE MUST BE A CURE!!!!

    By the way did you hear about the french doctor who is taking nodes out of the groin and transplanting for breast cancer patients? Although I suppose then one would be at risk for lymphedema of the leg. Not an answer in my opinion. I think the answer is a special stint or internal pump to replace the function of the nodes.

    Perhaps if we all keep speaking up, we can make a difference together to at least put in motion additional research :-)

    Thanks Julie, many blessings to you and yours...
    Robyn

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  6. Hi, I have just had another flare after quite a few years of none. 13 years ago I had a serious prob with Lymphedema just after 13 nodes removed, lumpectomy and radiation. This is in my right arm and I am right handed. I waited a brief period and didn't do a lot, but then began 'normal' life. The only flares I had to deal with was when using the chain saw or weedeater that vibrated the fluids into the arm faster than possible to remove. Rested and did drainage exercises--mostly kept the arm elevated also. I consider myself blessed as a friend has had to wear a 24/7 compression for her challenge. I have a flare at this time and will see a Lymphedema therapist this week. Years ago our insurance paid no bandaging costs--they do now, but we too have to pay for the sleeves. Sites, like this, have been a great help with the sharing of others experiences and caring. Surgeons are trying to develop less invasive procedures in hopes of lessing a persons chance of Lymphedema. Let us all hope this is not far off for those coming after us, hoping they will not have this same challenge!

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    Replies
    1. I'm sorry you suffer through it too. I find it quite annoying but I try and try to keep in mind that these side effects serve as reminders that I SURVIVED and I'm here with my precious family and dancing with "NED" still and that's such a huge blessing. Hugs to you. I hope your flare up is under control and that you're doing well!

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