Linda’s Story

by Heather on May 8, 2017

I suspect that my lymphedema in my right forearm began in 1986 when I fell off my bike riding over railroad tracks, landing on my right arm. The impact probably damaged the lymph nodes. Very gradually over the years, I noticed that my right forearm was becoming wider than my left. Any doctor whom I asked about it had no idea what could be causing this condition and brushed it off as being of no concern. Around 2009, I saw a rheumatologist, a dermatologist, and a neurologist, and only the dermatologist offered a suggestion, that my arm contained excess collagen.

My forearm was becoming more swollen and the skin was stretching, to the point that I was beginning to wonder whether someday only loose sweatshirts would fit over my arm. In 2011, my arm suddenly became blotchy red and itchy and even more swollen, the puffiness extending into my hand. I returned to the dermatologist’s office, insisting that someone needed to determine what was causing this. He convened some colleagues and one of them suggested lymphedema. I then saw a lymphedema therapist for several weeks. She massaged my arm and taught me how to wrap it in bandages and foam wrap for compression while I was waiting for my customized compression sleeves to arrive in the mail. My arm lost considerable volume due to her massage therapy and the compression wrapping. It took me half an hour to wrap my arm every day, plus time to hand wash the bandages, so I was very relieved when my compression sleeves finally arrived.

My treatment was covered under my medical plan at the time. The therapist told me that the treatment cost about $700 . She maintains that a lymphedema patient should receive therapy as a a sort of tune-up every year or two, but no medical plan covers more than one course of therapy. All of the treatment, the wrapping, two sleeves and gauntlets for daytime, and one sleeve for nighttime cost me only $457 because I had a good medical plan at the time.

Now my current medical plan does not cover durable medical equipment at all. Every 6 months, I require two new sleeves for daytime, at $185 each. Every two years or so, I require a new sleeve for nighttime, at $527. My previous medical plan covered durable medical equipment at 80%/20% after my $3,000+ deductible, which was pretty much the same as not covering DME at all. One medical plan that I’ve had covered DME once only, as if lymphedema garments were like crutches, purchased once and all set for life.

I am one of the lucky ones. I don’t even notice my swollen arm anymore, as the sleeves do such an effective job. But this is only because I am paying for the sleeves out of my own pocket, an expense that becomes increasingly difficult to afford. I am 54 years old and will need to buy many more sleeves in my lifetime. Without them, this condition that I don’t notice anymore would worsen, exactly as was happening prior to my treatment. We need better insurance coverage for lymphedema garments, recognition that these need to be purchased many times during a lifetime, and increased awareness of this condition among medical professionals.

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