Lymphadema / lymphahell

This is my impression of Dr. Zoidberg. It is my first bandaging for Stage II lymphadema.

This is my impression of Dr. Zoidberg. It is my first bandaging for Stage II lymphadema.

Today was a typical day in my new normal: sleeping from 1 a.m. to 9 a.m. with many wakings due to lonely, mewing cat Benny, bad dreams and new screeching leg cramps; drifting in and out of sleep from 9 a.m. to noon; up until 5, then sleep until 9:30 when Tessa woke me to a fully prepared meal (made by her and Luka). That was a bonus and welcome treat. Now I will prepare for the new fun in my daily routine—bandaging my lymphadema arm.

The bandaged arm. Note my normal hand and how you can actually see bones there.

The bandaged arm. Note my normal hand and how you can actually see bones there.

I had been managing the lymphadema in my right hand, arm, breast and trunk very well since it was diagnosed in November last year. Twice daily self MLD (manual lymphatic drainage) massage, meticulous skin care, wearing custom-made compression gloves and sleeves all day (only taken off when I was lying down) and participating in a specialized exercise program (Lebed Healthy Steps) kept my lymphadema at Stage I. After my May surgery it was difficult to do the self-massage and since I was on bed rest for two weeks I kept my arm elevated and massaged as well as I could. Unfortunately it wasn’t enough. In June my arm started hurting the same way it did when I was diagnosed, and I could see the swelling was increased. I saw Dr. Chang, a physiatrist at the Princess Margaret Lymphedema Clinic, and among other things we discussed—like this freaking fatigue that keeps hanging around—he referred me back to a lymphadema therapist for hand and arm measuring and the dreaded treatment for Stage II: bandaging.

This angle shows I actually still have all my fingers...

This angle shows I actually still have all my fingers…

I thought massaging and wearing the compression sleeve and glove was a life sentence, but this fresh hell is far worse. My arm at Stage I was only 3-4% larger than my unaffected left arm, which was very good. Now my right arm is 13% larger, and feels gross and painful. Compression sleeves and gloves hold your arm and hand at the size they are. Only bandaging can hope to reduce the size of the arm and hand. Extended massage of the neck, arm, etc., etc., right down to the tops of my legs now has to happen twice a day, no more than an hour at a time. Then I do the bandaging: a stockinette over the entire arm, bandaging of all the fingers, thumb, hand and wrist, then wrapping of the whole thing in cotton padding, then wrapping with three different widths of compression bandages in specific patterns and directions, right up to the armpit. WITH ONE HAND!

Luka came to the first bandaging appointment and videotaped everything. Thank God for that, because even with his video I was barely able to figure out what to do once I got home. I do not know how anyone could have that one session and then be prepared to do this at home with only one hand to do everything. My brain was unable to absorb anything from the session. That is very alarming.

I have had three good sobbing cries while trying to do this bandaging. It is taking me almost an hour each time. Add the hour-long massaging before bandaging and I’m looking at four hours a day on my hand and arm. Try not feeling hopeless. I’m hoping the pity party on the Stage II is nearing its end and that I’ll be able to speed up the bandaging somewhat.

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27 Responses

  1. Does this mean that this will be your daily routine for a period of time, or forever? I’m sorry to hear about Stage II. From what I’ve seen of you through your posts, you are resilient and will manage this as well.

    • Hi! I will be like Dr. Zoidberg for likely three months, according to the Lymphadema Clinic therapists. I wish it were just a month, but I have to do it until the size of my arm goes down, way down. Thank you for the vote of confidence!

  2. OMFG!! That is truly horrendous! I thought having to wear compression pantyhose this summer and still having a slolen abdomen was the end of the world. Bandaging? Are you kidding me?? This is like a horror movie. I’m so sorry! You poor puffin. 😦

  3. I am so sorry that you are having to do this but hopefully at the end it will be worth it and your arm will be much smaller… If you like to swim exercises in a pool are very good for LE as it gives natural compression while you are in the water… It really helps to stimulatevthe lymphatics all over your body .. Take care

    • I am hoping so too! I wish I had the nerve to get in a bathing suit, but I haven’t worn one in so long that I cannot imagine it. I haven’t been in a public pool since high school. I am astounded to realize that! I have heard how beneficial it is to do exercises in water, so maybe I will start visualizing myself in a suit at the local pool… 😉

  4. Reblogged this on My Lymph Node Transplant and commented:
    I am reblogging this post to show just how difficult it is to look after a limb with lymphoedema… It takes a great deal of time and effort to keep it under control… Thanks for sharing with us

  5. Have you talked to your therapist about getting a flexitouch from Tactile Systems? I used it 3-5 times a week, one hour at a time. Trust me bandaging gets easy after you do it a few times. Just be sure your bandages are rolled before you start. I don’t bandage any longer. I have noticed that salt and not drinking enough water affects my limb. I went from 6 to 17 to 11 and back down to 6% watching salt, wearing my night time tribute (which you should have!).

    Good luck, hang in there..it will get better! Also having a great therapist helps. I did have bypass and transfer with Dr. Chang (transfer February ’15) so jury out whether it will help. I have been told it can take up to a year.)

    • Holy cow, Elena! You are a wealth of information! I went from over-the-counter sleeve and glove to custom sleeve and glove and now to bandaging. No one at my clinic or physic or fitter has mentioned a Tribute sleeve or the Flexitouch. I’m at the clinic tomorrow so will inquire about both. I went to the Flexitouch website and it looks like a dream to lie there and get massaged from thigh to fingertip—but nowhere, even googling at large, could I find a hint at the price. Pretty dear, I’m guessing, but a personal recommendation from a fellow LE patient is enough for me to continue the research. I think it’s fabulous that you had the surgery with Dr. Chang (he is one of the superstar surgeons, yes?) and I will be pulling for your positive outcome. Thank you so much for writing!

    • Elena, I was reading your post again and realized that you had your LE surgery with Dr. Chang in Feb, 2015–my surgery was in June 19, 2015—-you and I are in the same boat—my LE is in the left leg–I have had it for 3 years and after doing my research, I went with Dr. Chang fo the surgery….Yes, you are correct–the jury is still out on this one—-I refer to my new lymph node in my left groin as my tomato plants that will sprout by next year–LOL

  6. I sent a long response and it was deleted——-I don’t know why but I will find the energy again in a bit——Liz

    • Heard that! I do that all the time lately, write a decent comment, am pleased with it, then with all this freaking bandaging on, my finger slips or my arms drops and I delete the whole thing. So frustrating!! Thank you for reading and replying, and I’ll keep a look out for when you try again. 🙂

  7. I feel your pain—I have been to the emotional spot where you are–only thing is I am there with my left leg. I have gone thru all of the above as you have and spent 1 year of tears until I found this glorious blog and it saved my life—it may sound dramatic but every time I opened up this blog and read about someone else’s sobs and tears I felt like I had a support system…. for me it is my leg and believe me, caring for the leg is more difficult in that the leg is continually in a dependent position and there is no way to elevate it, unless you are laying down- Gravity is the enemy of LE. I have had the LE to the left leg for 3 years, since 2012.

    Wearing a skirt/dress/ or shoes other than sneakers is a nightmare. My left swollen foot and ankle needs a wide width while my good leg, the right leg needs a medium width shoe. Good luck with that!! I live in sneakers. I am a nurse in an ER and at the end of my 12 hour shift, my left leg is rock-hard and my husband has to help me remove the elvarex one legged half panty. At night after removing the Elvarex, I use the flexi-touch for 1 hour, and then I sleep in a quilted heavy night time garment with a sleeve to help with the compression. In the morning when I put the elvarex back on, I sit on the floor with a pair of Playtex gloves in front of the fan and pull it up—it is the pits—I wear elvarex thru the hot CT summers and in the hospital while working. I know what you are going thru…..it pains me that any of us have to go thru this….

    I just had surgery for the LE with a Dr. D. Chang in Chicago. He did a LNT and a LVB on my left leg and now I AM WAITING FOR results……Dr. Chang said it could take a year for the lymph nodes to develop in my left leg. I pray every day for those lymph nodes to grow. Yes, the LE is a type of hell, but I am grateful I am alive and cancer free and have been since 2006. The wrapping sucks as does everything with LE. My surgery cost $75,000. but thank God my insurance paid most of that bill–there are many things to be grateful for.

    No one promised us a rose garden.We can all get thru this. We are not defined by our swollen limb; we are so much more than that. It definitely is a pain in the butt –anyone with LE understands the work, inconveniences, frustration in obtaining supplies, etc. but you get thru it and you’ll be stronger for it. Keep your head up (and your arm!!!) Liz

    • Liz, I am so happy to see you wrote back! I cannot imagine what it is like to be dealing with leg lymphedema like you do. You’re right—the only way you can fight gravity is to lie down, and I can lift my arm up anytime. Reading your struggle makes me realize I had better get over my pity party soon. The very fact that you continue to work 12-hour days in the ER is incredible. That and the amount of time you have to do the Flexitouch, massage, on and off of the garments and upkeep—how can you still do your shifts? You are an example whom I hope others follow.
      I really hope your surgery gives you a lot of relief when the nodes are fully established. The surgery is so incredibly involved, it takes a brave person to undergo such a complicated procedure. And I’m with you—being cancer-free is great place to be. Congratulations on coming up on 10 years of survivorship! Thanks again for writing, and I’ll be thinking positive thoughts for you.

  8. Hello itsbecauseisaidso! I have had lymphedema in the left leg for ten years. I remember those awful days of exercising, massaging, and bandaging. Fortunately for me my leg has stabilized and I no longer massage. I wear a compression stocking during the day and bandage at night. Pretty normal routine. But what I once considered a part time job, has vastly reduced in time I spend caring for the lymphedema. I hope that changes quickly for you as well. No one except those who have experienced it (or their spouses) truly understand the total lifestyle change this condition imposes.

    • thank you for the emotional support–it really does help—hang on- u r awesome–Liz in Connecticut

    • Hi Sherry—from your keyboard to God’s ear! It makes me very sad to feel the hard parts of my arm that don’t seem to be changing even after two weeks of really working it, but two weeks pales to nothingness against 10 years of lymphedema. I am so happy for you that your leg has stabilized. That is definitely a place I hope I get to one day. It cheers me up to hear you refer to them as “those awful days” because they definitely are awful, but they’re gone for you, and maybe they will be for me too eventually. Thank you for sharing your experience.

  9. I highly recommend Solaris nightwear garments. Expensive and a battle to get insurance to cover, but with the peace of mind. Even as you continue bandaging, you will become a pro and it won’t take nearly as long. Five years ago I was diagnosed with lymphedema in my left leg. I cried while bandaging many times. I just felt lost. But over time, it got better.

    • Hi Christine! The Tribute by Solaris is going to be the next thing I order (along with a new custom sleeve and glove) after my bandaging is completed. I’ve heard about it here in comments, and I’m sold. This morning I did the bandaging in 40 minutes, and didn’t have to go back and redo it, so I am becoming faster. I have to say I have felt lost—it seems like you get an hour of instruction, then out you go! DIY lymphedema therapy! Give TouTube a go! But with Helen reblogging my post I’ve had so much support I no longer feel lost and alone with all this gauze, padding and bandage. Thank you for writing. 🙂

      • OMG Christine, I am remembering the beginning of this journey and the length of time trying to wrap/unwrap/watch utube/ cry/curse and then start all over again—BUT in time, the extremity stabilizes and you get acclimated to this process and quicker in the execution of the wraps………YOU WILL GET THERE—–I have total faith in your ability….We are all the same and can do anything. Helen Reddy wrote/sang a song in the early 70’s called, “I am woman!”–“we are strong, we are invincible, we are woman!”–Liz

      • Salutations Sister Lymphodivas! I have worn CircAid nighttime garments for years. They sound similar to Solaris but less expensive. Check them out on line! 😉

  10. I had to fight the insurance company for 1 and 1/2 years to get the flexi-touch machine—I sent pictures and a letter and finally in Jan of 2014 the clinical guidelines changed and I was approved for the flexi-touch…Everything has been an incredible struggle but eventually I was victorious… I feel like I have fought the battle of my life since the journey of Lymphedema began. The lymphedema therapist told me to Start wrapping the comprilan around the night time (tribune) garment to bring down the measurement…God knows how tired I am from all of this……3 long years and not much change……sorry, just feeling ‘blue’ tonight…Liz

    • Hi Liz, I am not surprised at all that you’re feeling blue. I’m surprised that you can make it through 12-hour days in the ER! Lymphedema of the leg is a huge battle, made all the more hideous by having to fight with the insurance company. I have no idea how getting anything more than a sleeve and a glove will go up here—I live in Toronto, Ontario. My health insurance at work is very finite, and there is no room for a Flexitouch there. Government health coverage is excellent for hospitalizations and surgeries, but equipment? That will be an all-new experience.
      I’m hoping that your surgery will give you some relief when it kicks in, and that bandaging on top of the Tribute will only be temporarily. Being told to do that would plunge me into despair as well. Poor you! Be kind to yourself and remember you beat cancer, your insurance company and you will beat these blues too. ❤

      • Thank you for the response—–love this blog and everyone who contributes—I could not go it alone if not for this incredible support system and the fabulous, intelligent, knowledgeable, people who open their hearts and share their stories. Liz

  11. Yes, the night time quilted garment I sleep in is the Tribute with the sleeve on top of it. I am used to it now and I think it’s pretty comfortable.-I have been using it for about 2 years I use the comprilan wraps on top of the tribute (occasionally). Now I am waiting for the new elvarex garment which I ordered 1 month after my surgery which was in June–I ordered the new garment in July. I went to an organization which orders the compression garments for me called NEOPS-that stands for New England Orthotic and prosthetic system.
    The therapist in Chicago where I had the surgery done said to get new snug measurements so the garment will really support the new surgery. I went for measurements July 22 and took my present garment with me (so they understood what a 1 legged 1/2 panty meant) to make sure there were no mistakes in the ordering. You have to be so explicit because the people doing the measuring may or may not be focusing on the job at hand. If the measurement gets submitted incorrectly, this custom made garment will get to me with incorrect measurements and then I will have to wait another 2 months for the correct one to arrive.

    About 2 week later, I called to inquire as to the progress of my order since no one had called me to give me an update. I got the usual “We are waiting for the pre-authorization from the insurance company.” -I was connected to another office and I asked the same question about why hadn’t I been given as update. I told the office person I myself could call the insurance company and ask what is holding up the authorization of the order since I am the policy holder. The person told me that she didn’t have a claim number and that if I didn’t like how fast something is being done, I could change organizations and use someone else!!!! I got furious but held my tongue—I asked for the name of the mngr-the woman told me she was the mngr, so I asked “Who is the supervisor?” I was told he was “out of the office.” I was seeing stars. I got off the phone and allowed myself to cool off- About 4 days later I myself called my insurance company, Anthem, and asked “What is the hold up? I have had surgery on my left leg to the tune of $75,000. and now I can not get a compression garment to support the surgery?”

    The insurance person was lovely and checked into everything for me while I was on the phone on hold. She would come back on the line every couple of minutes to let me know, “Please don’t hang up, I’m trying to get to the bottom of this so bear with me.” I would thank her and I continued to patiently wait for a remedy to the situation. She was wonderful—–Everything was resolved and she told me pre-authorization has been given. Two days later I got confirmation in the mail.
    Sometimes you have to grab the bull by the horns and get the job done by doing it yourself. At times, it does feel like you are pulling teeth to get the job done…but just hang in there. It feels like you have worked a full day at the end of this BS…….Oh well…all In the day of the Lymphedema patient!!!!!

    God Bless us all and give us the necessary strength to get the products we need to care for the lymphedema…I hope anyone reading this gets some comfort in knowing we are all in this together and it helps to hear other peoples stories of frustration. Liz

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