Hats off to any that wrap
Comments
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I finally finished two weeks of end-of-semester grading: After way too much time sitting and typing in damp soggy weather, I woke up early this AM and desperately wanted to get some exercise, but my day sleeve was still wet from last night. Decided to risk it and went for a very brisk 6 mile walk wearing what I sleep in (an axilla-fingertip Tribute night garment with fingers wrapped in gauze and palm and dorsal swell spots). All I had to do was throw on some sneakers and go! It was only 50 degrees when I left for my walk, so the warmth of the tribute was welcome (other arm was bare). Not viable in the summer, but it was great to be out.
I wore it for 2 hours post exercise, partly to play it safe and partly because I was afraid of what my hand would look like. The answer: fabulous. The skin is deliciously loose -- wrinkly like the skin of someone who lost a lot of weight. My fingers bend in ways they haven't bent in I don't know how long. KS1
PS: My OT gave me a gift for getting through bandaging: elastic shoelaces. Love'em.
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Oh, KS, that is BEAUTIFUL! Good for you!
Wow, real fingers!
We get excited over the strangest things...
Binney -
KS1--YEAH!!!
You've got to post this on the kicking LE/exercise thread.
Great motivation and outcome!!
Kira
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Way to go KS1!!! I couldn't imagine walking outside in my jovipak.
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Yay KS1. What a great day for you.
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Thanks for the cheering ... maybe I will post it on the exercise/kicking thread.
I still don't have a day glove, so I have been wearing a day sleeve and bandaging my hand. If anyone has done this combo, I'd like to hear what you found worked/didn't work. Two specific questions are
1) do I put the sleeve on before or after I do the finger wraps (if before, then the sleeve is under the wraps)
2) should the short stretch bandage begin right at the wrist (i.e., where things bend or should the bandage cover more of the forearm
- Thanks KS1
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KS, this is all virgin territory, and you're a pioneer. You can try it both ways (sleeve before or after), but when I've tried it, pulling the sleeve on over the wrap messes it all up. I've started the short stretch slightly above the wrist, but wrapped really lightly over the sleeve because I didn't want to add compression on top of compression. Just enough to anchor it. Stay aware of how it feels and take it off if it doesn't "feel" right, y'know? Are you putting anything under the short-stretch? Frankly I hated the whole set-up and went with a full hand/arm wrap. It's just weird.
Well, but then, LE is weird. What can I say.
Keep us posted!
Binney -
I've done the sleeve on top/under the finger wraps. The problem with having the sleeve under the finger wraps is that the sleeve bunches at the wrist and leaves big indendations. (The sleeve is too big at the wrist because it was measured to go over a glove & my wrist has gotten smaller in the month since it was fit.
) By putting the sleeve *over* the finger wraps, I can eliminate the folding over problem. But, Binney, you are correct -- if I try to put the sleeve on after I do the finger wraps, it catches on the gauze and makes a mess of it. I tried using an easy-slide (donning aid), but it just made the finger wraps even more tangled. What I have been doing is putting on the sleeve first, then putting on the finger wraps, and then pulling the wrist portion of the sleeve down until it reaches the beginning of the ball of my hand. Two problems with this. 1) it is really hard on the sleeve, and 2) for the 5-10 minutes it take me to wrap my fingers, my arm is compressed and my fingers are not.
With respect to what I wear under the short stretch, I ditched the artiflex when I started being able to wear a day sleeve again. Now, all I wear during the day is: a day sleeve, 3 finger wraps (pretty thick layer on dorsum), palmar swell spot, dorsal swell spot, and 4 cm short stretch bandage.
Like you, my therapist prefers full-arm wrapping to day sleeve + wrapped hand. However, no matter how lightly she bandages, if the bandage goes above my forearm, my hand turns purple/ashen and becomes numb. At my worst, any compression above the forearm triggered the "dead hand" syndrome, but thankfully, I can now wear a Juzo soft day sleeve and Tribute at night.
So, all in all, my hand is much better than it was in January, but it is like a picky-eater toddler who will eat well, but only if things are made EXACTLY right. If I don't do the finger wraps perfectly even, I get pockets of swell. If I do it too tight or something gets folded, neuropathy. Oh and my persnickity fingers much prefer brand new fresh gauze each time. LE really is weird. KS1
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So my MLD girl was thinking that she wants to teach me to use long wraps as I am a mild LE case. She thinks maybe the long stretch wraps might suit me better. I told her that I am more comfy just layering on the wraps instead of pulling a bit to strectch and then wrap. This led her to conclude that maybe long stretch might be better for me.
So next time I am going to MLD I wil get that into my LE tool kit. She told me how it works with low and high working pressure but I forget how the principle is applied. I won't be using foam, I know that much and nothing else. Anyone wrapping with Long Stretch bandages?
KS1, Wow you are dedicated but I think if you need new gauze each time then for sure you need to have shares in a gauze company. That is expensive, you poor dear!
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The cost of the gauze does add up. When my LE therapist realized that I would be wrapping for the foreseeable future, she suggested I look into whether insurance covers bandaging. Turns out it DOES, but there is a weird twist. The insurance company requires the DME to charge by the foot for bandages (~ $1) regardless of the actual cost of the bandage. It turns out that my copay for the gauze was going to be about 4 times as much as the cost of just buying the gauze online.
I find gauze annoying. I can roll bandages while wrapped, but I find rolling gauze while wrappped very slow, and my hand does not like being uncompressed even for short periods of time. Thankfully, my husband has graciously accepted the task of folding the new gauze and rolling them for me. (He does it while I do MLD). He wasn't very good in the beginning (and my picky fingers hate creases), but he has gotten much better. But try as he might, he just doesn't do a good job flattening and rolling used gauze. That said, even when I use "second time" gauze that I have smoothed, my hand complains, whiny little appendage... KS1
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KS1, Binney uses a cordless drill to wind her bandages. I wonder if this will work with gauze. Either way, I am sure once you get the cordless drill everyone in house will want to roll bandages as it could kinda be toy-like to them. I looked at manual bandage winders and they were about 25 bucks. You can get a cheap drill for that price.
One of my sis. loves to roll, so when she comes over I throw the whole heap on her and she rolls away. She says it relaxes her. I bet it would be a different story if she wore them! When she is not there, I sit and put the wraps or gauze on my on my upper thigh and roll towards my knee. I use the flat of my hand as I roll. It works. It stays pretty straight. Hopefully it won't crinkle for your persnickely fingy's!
Anyone know anything about those long stretch wraps? I am curious.
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hugz -'you' can go to almost any good tack store or horse/livestock catalog and find hand operated bandage rollers for $10 -12.
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Kicks, Thanks,I will be soon getting my winder from the tack store nearby. I am shocked that medical supply shops charge so much more. It makes me think of the time when people bought Mane and Tail shampoo from the tack stores. They liked it as shampoo for themselves and it was cheaper than regular shampoo in the stores.
I may invest in the cordless drill too.
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Mane N Tail - oh yes - Hubby taught so many about it years ago - buying the horse -not the 'Human version' - for price.
My drills/saws/etc. are the ones that Hubby replaces with new ones (never worn out but he likes his new 'toys'. LOL). -
For those who need to stock up on supplies, LymphedemaProducts.com is having a sale through May 29th. Free shipping for purchases over $75 (code: MEMORIALSHIP) or store-wide sale (code: MEMORIALSALE). Transelast classic gauze is 33% off. KS1
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Bandagesplus sells hand held rollers for 17$ and wall mount for 20 something
http://www.bandagesplus.com/prd/158/881/EZ-roller.html
I had a horse for years, and never needed a bandage roller, but did use "vet wrap"--it's coban, but at the vodder class, they said vet wrap is essentially long stretch, while the coban is short stretch and they're not interchangable.
Kira
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I only had my wrapped once by my PT and it didn't last long. It was during chemo and I think I just have the right frame of mind to deal with LE and wrapping. So last week had a visit with the PT assistant to learn wrapping. My sister did some video.
Tonight my sister wrapped my arm. I was successful wrapping my hand (a first) and Dee completed the arm wrap first time! Gives me hope I can get the hang of it. I need to be prepared to wrap when I travel if needed.
I'm surprised at how good it feels. Just haven't been able to get the swelling to go down the last few days and thot wrapping my be the answer. Will find out tomorrow.
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Ohio, I think you'll find it very helpful. I just watched Guenter Klose wrap, for the course, and he made it very clear that no bandage should be painful. He made it look so easy--but he has 2 hands!
Good for you, and having this tool in your tool box is powerful.
Kira
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My sister is very interested in taking the lymphedema training so she loves wrapping and I benefit! She is an oncology nurse and is trying to figure out how she can use LE training at her job. While it will always be helpful it has to be part her job/scope of work for her to actually become LANA certified. She has already helped several patients based on the knowledge we have shared between us. Love that she is so interested, makes my life with LE less lonely!
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Ohio, her interest makes life less lonely for all her patients as well! Thank her for all of us.
Be well,
Binney -
All you wrappers, I am looking for help on a project and wonder if anyone here might be interested in lending an arm. I am nearly finished developing a self-study LE course for nurses, which is to be provided free of charge to any nurse interested in learning about LE, in some pretty good detail. The program will be piloted by a large group of nurses who work as case managers for one of the huge health insurance companies, where my daughter just happens to have a senior role in nurse education. After that company uses the course (and gives me feedback), the next step is to have it credentialed for continuing medical education for nurses anywhere. I write training for a living, and obviously LE is not my professional expertise, but with lots of research and some very high-quality review, I was able to create this program (thank you Binney, Kira, Nitocris, ohio4me, and several others who are currently working on review).
But--I need wrapping photos! I found a sequence that shows wrapping, step by step, created by a bco poster some time ago, but they are low resolution and more photos (too many small steps) than I can use. I need someone to photograph the wrapping process in about 6 or 8 steps, and provide me with a caption for each step, explaining what has happened, and what is challenging about that step. The idea is not to teach anyone how to wrap, but to demonstrate what wrapping entails, and to convey a good idea of how significant an effort it is for the LE patient--in time, patience, persistence, etc. No need to show any indentifying info--just hand/arm wrapping.
One important theme of the training course is to enable the nurses to see when and how they can provide LE patient education; check for symptoms that suggest a need for a formal LE evaluation; and in general be aware of opportunities to take early symptoms seriously and get BC patients into LE eval/therapy as early as possible. I hope that seeing visual depictions of the life imposition of more advanced LE will put an exclamation mark on the need to tune into our LE needs from the very moment of BC diagnosis.
Is anyone interested?
I also need lots of very short quotes from women with LE. I have many placeholders for quotes that punctuate the knowledge being conveyed, so I need help with quotes on certain topics.
If interested in helping with a wrapping photo sequence or some quotes, either raise your hand here and I'll PM you to work on details, or just PM me. I am also delighted if anyone else has interest in reviewing the course (no trivial assignment; it's about 40 pages long!).
Ohio4me, I'm very happy to hear your sister is thinking of LANA certification. I was not aware that nurses could become CLTs--I thought it was only available to PTs and OTs. Has she investigated the credentialing requirements?
In my very, very humble opinion, every single onc nurse should have LE training; perhaps not to the point of providing CLT-type therapy, but most certainly to be well positioned to listen and watch for symptoms; take pre-surgery/rads baseline measures; and provide LE patient education at every visit. Wouldn't it be grand if an office visit BP measure became the standard moment for touching base on LE with each patient????
I guess I wrote a book here--sorry!
Carol
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Carol, I've wanted to take wrapping photos for SUSO, but after watching Guenter Klose wrap, my wrap is unique to me, with gray foam inserts. I wish you could borrow his video....
The reason RN's don't take CLT training is that medicare, in it's infinite wisdom, decided about a decade ago, that nurses and physicians and LMT's could not get reimbursed for LE care. Brilliant, huh??? There are nurses, like Renee Romano who owns BandagesPlus, who are fully trained, and would have to work without taking insurance if they wanted to do clinical work. LMT's are becoming PTA's (PT assistants) to still get reimbursed.
This is in the US: in other countries, we hear about lymphedema nurses and LMT's seem to provide a lot of the care in Canada.
Whenever I think single payor is the answer, I look at CMS and wonder....
Kira
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Kira, I'm in Canada and I flew by the seat of my pants to find my own way while nurses and doctors said, "oh it's not too bad, it's normal".
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...so we can conclude that denial-of-LE is a universal medical approach! Nitocris has had the same experience in Finland, and her tales of how it's even worse in Russia make me cringe. But apparently living in two of the most technologically and medically advanced countries in the world does not mean those of us in the US and Candada get the care we need. And when you think about it, LE care is pretty darn simple. Maybe if there was gee-whiz technology to it, more physicians and their institutions would sit up and notice. Deep sigh here.
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At the Vodder Re-certification, Anna Towers MD from McGill showed pictures of severe leg LE, untreated as it was not cancer related and the Canadian health system doesn't treat non cancer related LE, and she said "This should not happen in a developed country!" and she said that these people's lives were in danger due to cellulitis.
It was horrible.
And a hundred dollars of wrapping materials and some LE therapist time--primarily LMT's in Canada--at least at the Vodder course, and they could be treated.
It's inhumane, it's unjust. It's so wrong. How can a condition that can kill you not be deemed necessary of treatment?
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Carol,
my latest experience of denial was a few weeks ago. I met a therapist from the general hospital and asked her if I could be tested on my prophy side with the TDC (Tissue Dielectric Constant) device they have. (works like bio-impedance). She answered that as it was not cancer related, I could not be tested. This new device allows assessment of pre-clinical LE and is being tested in their unit. Besides, she said that I could not have LE in my right arm, because lymph nodes were not removed! I know I also have "mild" lymphedema in my prophy chest, I can feel it.
I don't know if I am suffering from PTSD, but I sure am PTSD - Pissed, Tired and Sick of the Denial.
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Nitocris, I love your PTSD acronym!
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I can't exercise so I have taken up regular wrapping practice. Have you all practiced this month? Lets's get it over and done with. Heaven's above. I never want to forget how to do this.
What is the smallest width size of short stretch bandage? I think mine is too wide for my small palm.
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Hugz, I use a 4 cm on my hand. I found that the 6 cm was too big, initially. Apparently, it's not common to use the smaller bandage, and they do lose stretch easily. But it's so small, and it works for me.
Kira
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Hugz, I brought my wrapping supplies with me to FL but was so overheated and overwhelmed I did not do. I have appt with my LE therapist tomorrow to measure and have MLD to definitely get things stable as we head into summer months. I told her I wanted to video wrapping so I have as reference. Don't think we will do video tomorrow, as I need to ask a friend to go along.
For those of you who did video of wrapping, from what vantage point did you take? I am thinking of having friend stand behind therapist and me and aim camera down between us. I need from my point of view, and behind seems best way to accomplish, but I am not sure if her arm movements will cover what she is doing. Therapist is usually on my left when she shows me and rolls the wrap inward, if that makes sense. Or should I have person facing us? That way her hand and arm wouldn't get in way of filming. I would be watching video from opposite direction, but maybe that translates okay? Or should I have her wrap me from way she would do when not demonstrating to me? Then what is best vantage point for camera? Becky, didn't you do video? No wonder there's no good video on YouTube of this. If this works, I would gladly share any or all parts!!
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