I was diagnosed with primary lymphedema in May 2010. After 6 different doctors failed to diagnose my condition a nurse identified it and I was sent to the Lymphedema Clinic at the Adventist Hosp. of Maryland. I had MLD and bandaging for 8 weeks and my legs and skin are great BUT it takes me 3 1/2 hours a day and a horrendous amount of money to manage my lymphedema.
My insurance deductible is $4600 a year so that needs to be met first. Then, I am allowed 8 units or 8 single garments per year, and bandages are never included. MLD is considered PT so I have 30 units per year.
My first-year costs were: Flexitouch machine (MLD by machine) $10,000, bandages were $600, MLD and bandaging $25,000, daytime garments $1000, Tribute nighttime garments $3000-$4000. The physician who specializes in lymphedema who is in another state is not in my insurance plan so I pay out of pocket. Gas, hotel, plus $300 a visit.
So, the costs are high and I am lucky because I paid $6500 of the amount BUT it is very rare that insurance covers the cost.
I have several friends who have lymphedema and deal with wrapping and weepy legs all of the time. We need insurance coverage for our condition AND trained doctors and industry standards for treatment.
I am doing well but I am extremely compliant and diligent in my leg care, which is very life-altering.
