Lymphedema pumps

my therapist told me about the pumps and the distributer. I got a used 8 chamber one. I'm also a st 1 but it is noticeable. It savesme a trip to the big city and parking hassles. I don't do it religiously but I'm glad I have it. It takes so long to get an appt.

I have a FlexiTouch MLD machine that I've had for more than 6 yrs. I use mine daily (unless out camping where no electricity is available). It does a MUCH better job of MLD than I do - so for me, its the way to go. I do wear my day garments (sleeve/glove) daily and use my night garment nightly to keep under control.

My FlexiTouch has 3 garment sections that work together. The garment sections are,upper thigh/abdomen, upper body/chest and arm. It takes an hour for it to run a cycle. It starts by draining the upper leg/abdomen, then moves to upper body/chest then moves to areas of arm in the sections. When this is portion of the program is done, it reverses direction and continually moves from hand, up arm, around chest and down to abdomen/upper leg and then starts all over again at hand.

When my LET guy ordered mine a Representative from FlexiTouch had to bring it and do education.

I'm not sure I would buy a used MLD machine (VA bought mine for me so not an issue). For one thing, there are different sizes in the garments that go with the unit. If you are 125 lbs, a garment that fits a 200+lb person won't fit you and visa versa a garment for a 125 lb person can't fit a 200 lb person. Yes there are adjusments that are made but they can only adjust so much. Also with time and use the garments, the garments do have to be replaced. I'm on my 3rd set of garments as with time and use, the sections had 'blow outs' between the chambers.

Do I like my FlexiTouch - no - I LOVE it! I would hate to not have it.

NO! I do not have LE in "other parts of my body"! My ellbow and above and below is where my issues with LE are. The reason for 'empting' nodes in the rest of the body is so that they can accept the fluid that will be coming as MLD moves the stagnant fluid. Wasn't that explained to you when you were taught MLD?

I am a very active outdoor woman. For the last 3 weeks we have been over 100f every day.

Though I no longer live in FL, I am a Native and 6th generation Floridian on Mom's side. Dad's side had been in SW Fl since the 1880's so I do know FL - how great it was and what it had become.

Nor make totalally unfounded statements that I have LE issues in other areas because I tried to explained to you how a MLD machine works (MLD massage).

Yes, forgive me--totally jumped to conclusions about the FlexTouch for parts of the body besides the arm-- thought that when I saw pictures and many people on machines who have LE in other parts of the body using a large pump. My therapist did massage my trunk, legs, etc. when I had the wrap for 6 weeks 2 years ago so I do know the fluid has to be distributed throughout the body. I try to massage my arm toward shoulders, back, chest, etc. and do the exercises but not sure how effective all that is compared to a pump.

I have Blue Cross Blue Shield. They said since Medicare does not pay for sleeves they do not pay anything towards them. Day sleeves I can get online cheaper than at a Medical Supply, but the night sleeve was custom made and cost several hundred. Will find out if Medicare or BCBS will pay for a pump. 

Many thanks for your information and input. I appreciate it--hate to order online without knowing more about the machines from someone with experience.

Stephanie

There are several different MLD machine manufacturers and not all produce the same result levels for everyone. I personally only have experience with FlexiTouch and as I've said LOVE IT and would not want to be without it.

How long does the programmed cycle take to run for you? Mine takes an hour to run and I really can't see doing that much time twice a day (total of 2 yrs a day). Also, I was told not to run it more than once a day. I was told that it's OK to run it twice a day for a day or two IF having any unusual issues. Summer is great for me - winter not so good, as winters are brutal here and I can't get out and get as much exercise (I do go to the gym most day but not as good as actually getting outdoors) as I do during the summer so LE is much more of an issue in winter for me. But we are each different.

If you are still having swelling issues with using your MLD machine, you might want to wrap at night til you get the swelling under control. Or get a night sleeve. (Night sleeves work passively while you are sleeping (inactive/passive), day garments work actively while you are up moveing around (active).)

My LE therapist recommended the flexing touch and my medical oncologist said she would definitely prescribe one. I need to get through radiation before considering the pump; however, must one use it daily for ever? Luckily, I'm only stage one. The idea of a one hour cycle every day is quite daunting although I guess it could be justification for binge watching Netflix.

Lyn

Answer is no. I religiously used for two months during chemo except bad chemo days. Due to radiation I have not used it at all for the last month and a half. Because I have been busy i did practically no MLD since rads started. My LE is stage 1. I am even getting lymph nodes radiated. Swelling from rads and non usage of flexitouch is not bad so far. I am thinking I may be able to skip here and there.

I would like to add though daily usage is cumbersome at times but the benefit is worth the daily commitment..

Mimi

>>The reason for 'empting' nodes in the rest of the body is so that they can accept the fluid that will be coming as MLD moves the stagnant fluid.<<

Exactly! Your lymph system extends past the body part affected by the removal of nodes. My LET explained there are four “quadrants” of the lymph circulatory system, and there are channels that flow across the chest, down the sides, and across the abdomen. Even if your node removal impacted only one quadrant, MLD mobilizes the channels in the other quadrants to move the stagnant fluids into the capillaries & veins and eventually into the urinary system to be excreted. (Which is why we’re advised not to do MLD just before bedtime, unless we don’t mind running to the bathroom not long after falling asleep).

Most of the time I'm sitting up playing on my tablet or reading. Occasionally (more often in winter than summer), I'll lay on the couch on my left side (my LE is on right) watching TV.

We each have to find out what works for us individually. What works for me, may not for anyone else (and 'visa-versa).

I wasn't told to lay flat but to lay on my none LE side if laying down. I also can't say I was told not to use my FlexiTouch before going to bed - haven't had any issues with having to get up and 'run' on the few times I've used it before bedtime (primarily when I gone to Retreats) but could be different for others. On a similar note but no matter the time, I suggest that before you put on garments and start the cycle - go to the bathroom first as a 'just in case'.

3 days a week might be what will work for you - doesn't for me.

Oh NO - I NEVER lay flat on my back! Uncomfortable! And more importantly IF I did dose off, when flat on my back I have a very bad nightmare (the same on always!).

Do/Position yourself how is best for you! No reason to not be comfortable. Don't lay on the LE side though.

Have you cell within arms reach in case you get a call while cycle is running. Have the channel changer within arms reach in case you want to change the channel. Have water/juice within reach if you are a 'waterholic' like me - have to have water in reach all the time. Same goes for 'snackies' if wanted.

Was just sitting here 'thinking' (well trying to think ) and it came to me that I've never seen anyone comment on what they wear under the garment sections while running your MLD machine.

As the garment sections can not be laundered, I have sort of a 'uniform' that I wear to be sure the garment doesn't actually come in contact with the skin.

As I get cold easily, during winter, I wear a long sleeved turtle neck (not 'heavy' but 'snug' so no wrinkles) and snug sweat pants on the bottom. Also a pair of warm socks to keep 'toesies' warm. When I saw 'snug' I don't mean so tight that look like a stuffed sausage but snug enough so there are no wrinkles - not what I would wear to the store though but snug/smooth enough to comfortably wear under jeans instead of thermies when really cold outside. Actually, the fit for both top and bottom is about how thermies fit.

For summer, I still wear a light weight long sleeved t- shirt to keep skin off the garments themselves. For bottoms a pair of snug sweat pants cut off to knees or an older pair of cut off to knees leggings so not as warm and thinner material.

Also summer or winter, the few times I had to use FlexiTouch (away from home and forgot to take one) without a long sleeved snug shirt on there is a tendency for the garment to like to be a bit 'sticky' when removing.

I also have an electric fleece throw that when it's really cold I either sit on it and wrap around over body if sitting or throw over me if laying down. Its sort of like an electric blanket but smaller (like a throw) and cheaper than an electric blanket. The last one Hubby got at Walmart was between $20 - $25 last year. This was the 3rd or 4th one I've had. When I was doing Chemo, I had a hard time keeping temperature up close to 'normal' so was always 'freezing' no matter how many 'bankies' I piled on or how much clothes I had on so one night Hubby had found one at Walmart and brought it home to me. It helped so much, so after it quit working he got me a new one and I've not been without one since. Actually I use it year round as a throw when laying on the couch. So if you get cold easy, you might want to look into one.

So what other ideas work for others?

I’m just wondering when we submitted to insurance by any chance insurance might only approved for renting the FlexiToich Pump for half a year? Or we for sure own the piece of equipment?

Kicks - thank you! I’m still waiting for my insurance approval. I was worried that insurance will try to do the rental option.