Do you have a routine?

Anonymous

I have things I do daily to help keep my LE in check, but I'm noticing more lately that I really don't do them in an organized way. This is why I often skip or forget to do stuff that would help keep my LE under control. 

My general goals are to: drink lots of water, get good sleep, exercise, monitor salt intake and practice MLD. I avoid repetitive movements and lifting heavy objects to minimize flares. I will admit I do not do MLD as often as I should. 

What's your typical day/week look like when it comes to managing your LE and overall health? 

Suzybelle

Hi, Tina:

That's a great question and it's so important...I do have a routine, and when I get out of it, I suffer for it.

In the a.m. after my shower, I do MLD.  I focus on neck, left shoulder, right rib cage, right arm.  I have LE in my right arm and right trunk.  At night, I use my flexitouch machine after I do some MLD to my neck.  After an hour on the machine, I wrap my arm.

I also have to drink tons of water, too.  Walking helps as well.   I don't think people have any idea how much time treating LE takes...it's a commitment, for sure.  But now it's kind of like brushing my teeth...I just do it.

kcshreve

I do a few things while still in bed in the morning: stimulate the inguinal nodes, work on my tummy MLD with deep breathing, stimulate those nodes under the collarbone - and then I get up and finish, which includes stretching in the doorway, since my pecs want to stay tight which brings forward my shoulders, which then reduces lymph flow. I don't have a flexitouch machine (yet, still in appeals), but aside from that, my routine is like Suzy's.

kira66715

My routine is shot right now: currently it's finger wrap above the cast at night, and MLD twice a day.

KC--I was thinking about you, as I stumbled across the CIgna policy for pumps-they say: flexitouch works, but we'll never cover it!

http://www.cigna.com/./mm_0354_coveragepositioncriteria_lymphedema_pumps_and_sleeves.pdf

I don't know if the link works, but I googled cigna policy on lymphedema pumps, and the link is a pdf.

Good luck with the appeal.

Kira

kcshreve

Thanks for the link.  It's amazing that Cigna even admits a volume decrease with pumps, but then states that there is not enough evidence.  Looks like they are not going to cover a compression bra, either.  Only compression sleeves, maybe. Maybe since Cigna denies all these, this is why Flexitouch has not been responsive or very aggressive with this.  Disappointing, really.

kira66715

kschreve: I'll admit, for about 3 years, I worked for the "dark side"--writing insurance benefits for a medicaid HMO and doing utilization review.

Now, when I was asked to write a benefit, I'd "benchmark" CMS (medicare) and other insurances, and I'd usually do a literature search as well.

But, just to know, patients quite frequently won their appeals, and there are additional studies showing the benefit of flexitouch, and the cost of treating lymphedema is high. 

So, don't give up--also, when  patient threatened to go public, they would usually cave in an instant.

Also, realize that I had the power to over-ride the benefit--scary, no?--and I did all the time.

I found other company's benefits, and they were totally plagerized from Cigna, like word for word.

Fight'em!

http://www.ncbi.nlm.nih.gov/pubmed/20184680Cases J. 2009 Mar 23;2:6625.
Pneumatic compression devices for in-home management of lymphedema: two case reports.

Cannon S.

Gwinnett Sports Rehabilitation, Gwinnett Medical Center, 500 Medical Center Blvd, Suite 130, Lawrenceville, GA, USA. scannon@gwinnettmedicalcenter.org
Abstract

The two patients in this case series had experienced long-term difficulty controlling lymphedema at home. Both patients had used numerous home therapies, including older-generation intermittent pneumatic compression devices, without success. The Flexitouch system, an advanced pneumatic device, was prescribed to assist them with in-home efforts by providing therapy to their affected limbs in addition to the lower trunk area for the patient with lymphedema of the lower extremity; and the trunk, chest wall, and shoulder areas for the patient with lymphedema of the upper extremity. Both patients achieved successful home maintenance of lymphedema, as judged by limb volume, clinical observations, and subjective patient impressions, after incorporating the Flexitouch system. Neither patient experienced the deleterious effects (worsening genital edema; fibrotic cuff development) that they had experienced with the older-generation intermittent pneumatic compression devices they had previously used. Incorporating the Flexitouch system as part of maintenance may improve success for lymphedema patients who have previously struggled with in-home management.

Kira