Follow up for LE care

kira66715

All too often, patients with LE are "discharged" from treatment with no follow up. LE is a chronic disease. This was in the latest email from the NLN

The Importance of a 50,000 Mile Check -up
by Linda McGrath Boyle, PT, DPT, OCS, CLT-LANA

It is not unusual to meet a person with lymphedema who has elastic compression garments that are more than 6 months old. In other words, there has been no evaluation or treatment of the limb or swollen area by a trained lymphedema therapist for as long as the person has had the old garments.

Below is an outline concerning lymphedema management.

Tips for Successful Lymphedema Management: Recommendation Regarding Supplies

Know your insurance.
Which durable medical equipment (DME) companies offer coverage for your lymphedema supplies?
What is your annual bandage and garment benefit?
Replace garments every 6 months if worn daily.
Know the lifespan of bandaging alternatives and replace as recommended by each manufacturer.
Discard short-stretch bandages after one year of consistent use.
Replace open-cell grey foam frequently after 3 months of nightly wear, because they break down easily.
Obtain new closed-cell foams such as orange Komprex after one year of continuous use.
Launder or replace finger and toe bandages frequently to keep them germ-free.
Clean or replace footwear regularly to avoid fungal infections.

The top 10 Reasons to See Your Lymphedema Therapists Every 6 Months

To prevent an infection that could result in a hospital stay.
To prevent the involved area from becoming larger.
To prevent the involved area from becoming firm.
To obtain new garments for consistent and effective compression.
To learn about new and improved lymphedema products that are being invented.
To review your self-care strategies which may change and reduce the time required for your daily routine.
Your insurance company may change your garment benefit.
If your lymphedema worsens, you may need to repeat phase I treatment, which includes daily bandaging, manual lymphatic drainage, skin care, and exercises. If your lymphedema is well-controlled, you may only need one visit for new garment measurements and review of self-care instruction.
Most people more effectively control their lymphedema if they attend regular checkups with their lymphedema therapist.
Last but not least, you'll receive support and encouragement from your lymphedema therapist. You deserve credit for a job well done!

Taking care of your lymphedema is a lot of work and it challenges your ability to perform daily activities. It can also be very expensive. Some people with lymphedema do not wish to return to their lymphedema therapists because it reminds them of a difficult time in their lives. However, controlling your swelling helps to prevent a cellulitic infection that could result in a hospital stay as well as a large and firmer limb. If you do develop an infection, it is important to make an appointment with your lymphedema therapist, as you may need active treatment. You may need to learn new bandaging routines and purchase compression garments with different specifications.

Regular checkups include re-evaluation of fluid volume, tissue firmness, skin condition, body weight, and exercise program. Controlling body weight and exercising regularly are important for persons with lymphedema.

I encourage you to be an educated consumer and find a lymphedema therapist that can be your partner in managing this life-long condition. You can visit lymphnet.org or clt-lana.org to find a list of therapists in your area. When moving or heading south for the winter (snowbird syndrome) please ask your current lymphedema therapist to recommend a new qualified lymphedema therapist.

It is helpful to regularly consult the National Lymphedema Network's website for new and updated information. The website contains reliable information according to current medical evidence or expert opinion.
 

Lunakin

Thanks for posting this important advice.

inspiewriter

Yes. thanks for posting. I have not been back to a therapist since my initial series of visits.

kira66715

bump

Linda Boyle is on the LANA board, and just a great PT

GottaloveNED

Unfortunately, my insurance policy requires an evaluation, a treatment schedule with records of improvement, and a target date for moving to self care, so I end up having to go in for a reevaluation every year or so just to check in (or when I have a flare-up).

Thankfully, my therapist is GREAT and communicates with me by e-mail whenever I have a question or an interesting thought or comment I have picked up on this forum.

hugz4u

This is really good info to print off. Thank you! 

AnnetteS

Good info.  Thanks for the bump!

Binney4

Bumping for Cinnamonsmiles. (And just because it's great information for everybody to review!

Good morning, all!
Binney

Cindyl

Just put a note to schedule a "6 month le follow up" on my caledar along with the ro, mo, bs etc. Thanks for the heads up. 

cinnamonsmiles

Well, I saw my family dr. and she said I don't need follow up care for my LE. She also told me that wearing sleeves is a matter of my comfort. Huh? How misinformed she is....and so incredibly disappointing. 

I am going to print this out for my family doctor. Thanks for the bump and posting it!!!

nibbana

My physical/occupational therapy department claims I don't need any more follow up treatment until I get worse.

Gee thanks

Denise-G

I am fortunate to have an amazing Lymphedema Specialist in Toledo, Ohio with the Mercy System Hospitals.  I see her twice per month.  My LE is getting under control, and I'm learning to live with it in peaceful coexistence because of her.

hugz4u

Denise, That calls for a round of brownies and an organic chocloate bar!

Denise-G

hugz4u- thanks for the permission!  I had way to many chocolate chip cookies last night! LOL!