Medicare won't pay for MLD?!? Seriously!!!

Maggerle

By some stroke of luck, I guess, when they called me to confirm my app't tomorrow at the Lymphedema Clinic, I was able to talk them into letting me come in today...They all seemed very nice, and I was confirmed to have lymphedema in my right breast, arm, hand and back on the right quadrant...I'm set up for an appointment to learn how to do the MLD this coming Monday...The young gal wasn't supposed to say anything, but she informs me, quietly, that medicare will not pay for MLD, only for the therapists to show me how to do it, and I'll be doing it daily...Also, the wraps on Monday, Wednesday and Friday, which are also not paid for by Medicare, that I will be using until the swelling goes down and then I'll switch to a compression sleeve, which Medicare doesn't pay for...I've never paid for anything since I got medicare, but this particular crap is not covered, and I'm sick about it...Apparently some insurance pays for it, and medicare USED TO pay for it, but not under Obamacare...Now would someone please pass me the barf bag! I'm not a lazy person, but they did ask if I had a friend or advocate that could help me with the back drainage...I have some great friends, but dang, I hate to ask anyone to do this on a regular basis...Major ARG!!!! I so can't believe this, that I'm going to call UTMB tomorrow, and see if it's just the "clinic" or if it's the same at UTMB? The little gal said I'd next X amount of bandages, and it would cost about $125...Mind you, we haven't discussed compression bras, and sleeves...Sigh...Something has gone wrong here...I signed up for plan F Medicare Supplement, so I'd never have any out of pocket, but medicare has to cover the incident for Blue Cross to kick in....Does anyone have any helpful hints from Helloise?

Binney4

Maggie, it's true that Medicare won't cover compression garments or bandaging supplies. But as far as I know they're still covering therapy--I'm on Medicare and have had therapy within the last year, paid for except for my small copay. The garments, though, are not covered. There's a bill before Congress that will probably take another couple of years to get passed--it's called the Lymphedema Treatment Act. A crew of volunteers has been working on it for several years, and they now have a lot of support--but not enough, and of course with every election they have to make new efforts.

http://lymphedematreatmentact.org

By all means check with UTMB. And on the other hand, if the ones you saw today will teach you and offer some sort of supervision, you may very well be able to do that. As for asking friends to help, DO have them come along and learn--it helps to have others who can help you remember what was said and the steps to take. Your back is hard to do by yourself, but not impossible--I've used a long-handled paint roller. Others use swim "noodles" which they place against a wall and manipulate their back up and down against it. Still others you VERY soft-bristled brushes with long handles. There are ways to cope, but without insurance help we all have to get creative.

Garments are another thing--they're pricey. Shopping on-line and comparing prices helps. I like BandagesPlus, LymphedemaProducts, and BrightLifeDirect.

You can see why I've become an avid advocate, right? This is an orphaned condition, and it takes a lot of "help from our friends" to see us through. Hang in there! And keep me posted on what you discover.

Huge hugs,
Bonnie

Maggerle

Thanks, once again, Bonnie...I sure hope that UTMB will cover the drainage massage...My concern, more than the money, is having it done right...I just don't feel I have the confidence to do it correctly....And although the young gal assisting me today seemed so nice, I ask her if my right side would ever be the same as the left, and she gave me a very very very lame maybe...I wasn't convinced, for sure! I'll keep the long handled paint roller, and swim noodle in mind when I'm shown how to move fluid from my back...I wondered what that terrible itching was all about?

Oh my goodness yes I can see why you are an advocate! As soon as I start thinking, acting, and speaking like a normal human being, again, I'm hoping to join you in your efforts...It certainly is a neglected corner of society, and for women who have already had to endure more emotional and physical challenges than should ever happen to anyone...

I think I'll run to the medical supply store, tomorrow, and see if I can get a good support bra...I'm so apprehensive about swelling even more over the next five days...Boy, this disease has consumed my every thought for what seems like forever now...I need a hobby lol...

Warm hugs (but not to warm argh lol)

Maggie

Kicks

You might want to look into an MLD machine. They simulate MLD massage. They are not inexpensive by any means (different ones have different price and I'm told different efficiency) but I've been told that some/many insurance companies do cover the cost (with perhaps a co-pay).

I've had a FlexiTouch for close to 6 yrs (use it daily) and it does a much better 'job' than I can do. It might be a good option for you to consider as it does the upper leg and lower abdomen then the upper body (chest/back and upper shoulder) then onto the arm/hand (as does manual).

I know nothing (personally) what insurances pay for or don't. My care is through VA and I get what I need - my FlexiTouch, my day garments, night garment and any wrapping 'stuff' I need. I get 2 new garment sets (sleeve and glove) every 6 months which have to be Custom because of syndactyly in hand (somewhat webbed fingers) and arm as measurements needed in low compression are not available OTS (Off The Shelf)

That brings up a thought - getting the correct compression level is not as easy as just walking in medical supply or 'ordering sleeves/gloves. The wrong level compression can do more harm than good - too high or too low. For me, low compression works great but higher causes major swelling - especially hand. For others - it's the reverse. This is only part of why you need to see an LET with experience (not preconceived ideas) and understanding that we are each unique and there is no "One Size Fits All". All PT's who claim to 'know everything about LE' don't (no one knows 'everything about LE with everyone - it can take a while to find what works best individually). My LET guy is an OT.

Remember that we are each unique. The experiences of one are not what all experience. I am a very active 'outdoor woman' and LE does not slow me down at all - I do any and everything I want to do with the full approval/encouragement of my Drs and LET guy. Educate yourself to the best you can, but don't choose to dwell in negative.

Maggerle

Bonnie, over the past few days, I believe I've cracked the code on why the first place I went to doesn't get paid for MLD...Because the girls are not qualified to do it! I'm sure it will be just fine at UTMB Breast Clinic...I did go by Second Silhouette this afternoon, and she reiterated what you said about compression garments and bandages...However, she said Medicare will pay for 12 bras a year, so that's a good deal...I'm, especially excited about it, as I was concerned about constantly washing them in the summertime and getting them dry for the next day...As we all know, bras don't last long in and out of the dryer...Kicks, I wish I could afford and MLD massage machine, but I think I'll be improvising for the back areas...

Well, I can't believe how much I've learned over the past week...Not a class I relished attending...However, you girls are encouraging me that this is doable, and I'm working one day at a time on acceptance...I can assure you, I'm nowhere close to that goal...Sometimes I get so upset, I just start crying...Even w/a cancer diagnosis, I always had hope it would be cured, and it was...The chronic part is the hardest...But I am doing visuals, imagining myself in "that" place encouraging someone that is in "this" place...You ladies are helping me w/my vision...

Hugs,

Maggie