Caring for the Skin You’re In: Cancer, Cellulitis and The Lymphedema Treatment Act

Right now, I’m sitting in the heat, with this hot computer on my lap, and every fan in the house aimed at me while I try to type with just my left hand. My right hand is out of commission and elevated on a pile of pillows. This scenario is not conducive to getting much writing done – or to adequately being there for the 6-year-old. On days like this, I’m the yell-at-the-kid-from-the-couch mom, rather than the walk-across-the-room-and-address-the-situation-appropriately mom.  The heat doesn’t help with that either.

Nor does the pain.IV medication

What’s going on with my arm? It’s recovering from my second bout of cellulitis this summer. Cellulitis is a skin infection that can be life threatening; it also puts me out of commission for a few days with a high fever, exhaustion, chills, and extreme bone and joint pain throughout my body, as well as the pain in my arm. It usually requires a run to the Emergency Room, and overnight or two at the hospital for IV meds.

The cellulitis is a complication of a complication of breast cancer. The cancer got into the lymph nodes, the lymph nodes were removed, I developed lymphedema, and occassionally develop cellulitis infections from the lymphedema – a few of the many lasting gifts of cancer.

The cellulitis is an acute infection that can be treated with antibiotics; there is no cure for the lymphedema. But there are treatments that are helpful. I would be lost without my physical therapists, and their massages are crucial to helping maintain circulation. Additionally, they taught my husband some of the massage techniques so he can provide some help at home.

The most important tool I have staying ahead of the lymphedema are the various types of uncomfortable, but totally necessary, compression garments.

lymphedema gauntlet

There are several different types of compression garments that I use, some for sleeping, some for exercise, some for when my arm swells despite my best efforts.

lymphedema sleeve

Each of these garments are made to measure, and quite expensive. They must be washed after each use (especially after exercise), so it is important to have alternates, one to wear while the other is in the wash. I can easily wear three different sleeves in a day when I am doing physical work, or in the summer when everything is hot and sweaty, and that doesn’t count the separate garment designed for sleeping.

Each garment is good only for about 6 months before the elastic starts to lose its integrity, and it can no longer compress the way it needs to, so that doubles the amount I need for the year. Then there are the night garments, also made to measure, and the additional wrapping equipment for the inevitable flare.compression garment with ace bandage

These sleeves are medically necessary, prescribed by a physician, can prevent life threatening illnesses, and usually not covered at all by insurance, or insufficiently covered. I’m lucky; my health coverage allows two sleeves and two gauntlets (for the hand) a year, plus one night compression garment every two years. It’s nowhere near enough, but it’s something.

For many people, these compression garments can mean the difference between their ability to hold down a job or not. They are that important. Covering the cost of this medically necessary garments can save insurers money by helping to prevent life-threatening and expensive treatments down the line.

There is currently a bill in congress with bipartisan support. I’d like to see if we can keep it alive all the way to the point where it becomes law and can save some lives. The Lymphedema Tratment Act is a federal bill that aims to improve insurance coverage for the medically necessary doctor-prescribed compression supplies that are the cornerstone of lymphedema treatment.

 

lymphedema treatment act

This video explains more about how the Lymphedema Treatment Act, and why it is necessary.  I was particularly touched by the story of the little boy. Imagine needing these expensive garments, how quickly babies grow, and all the parents out there know about the inevitable blowouts. How many clean garments must she have needed for each day? That would be devastatingly expensive.

 

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This year, I am participating in Susannah Conway’s August Break. Follow the hashtag #augustbreak2015 on various social media to find more posts from participants.

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