I was born with a condition called Spina Bifida, which, in a nutshell, means I am paralyzed from the waist down, with some loss of bladder and bowel control as well. Not fun, but life goes on…..
My swelling is not caused by a “true” lymphedema, but presents in much the same way. My diagnosis is phlebolymphostatic edema, which is secondary to my SB. Although my lymphatic system is healthy, my venous system is not. Due to my paralysis, I have no muscle “pump” to help return the fluids in my legs back into my circulatory system. Without elevation and compression, the fluids pool in my legs and feet and I swell.
From the time I was a teenager, until my diagnosis and treatment in 2007, I suffered with numerous pressure wounds and infections. Over an approximately 25 year period, I had nine cellulitis infections and three osteomyelitis (bone) infections. Almost every cellulitis infection landed me in the hospital for at least a week on high-dose antibiotics, with 24 hour nursing care. Every osteomyelitis infection landed me in the same hospital for at least SIX WEEKS on even higher dose antibiotics with 24 hour nursing care, (Medicare does NOT cover home IV antibiotics!)
Not only did these infections seriously jeopardize my health, but as a single mother, each episode was very disruptive to our normal family life.
Physicians would treat each wound or infection as it occurred, and I believed I was getting the best care possible. However, the cause of these wounds and subsequent infections was my swelling, and short of being put on a diuretic (which by the way, is CONTRAINDICATED in lymphedema) and told to “keep my feet up”, nothing else was done. I was told time and time again that nothing COULD be done. In the last several years, my swelling had progressed so much, that my doctors suggested I amputate both legs. Reluctantly, I considered it. I was desperate, miserable and VERY depressed. I was only weeks away from my pre-op visit with the surgeon, when a wound care nurse who was helping care for my wounds suggested a local lymphedema clinic. Ironically, the surgeon who planned to do the amputation said he could not operate on someone who had so much swelling and they were suggesting treatment so the surgery would be safer. I went for the initial eval with my new lymphedema therapist on Jan. 3, 2007, and never looked back.
By September of that year, I was back in shoes again. My daughter, who was 11 at the time, had NEVER seen me in shoes!!
By the time I started treatment in 2007, I had Stage 2/3 lymphedema in my left and right legs respectively. Had I been treated much earlier, all those wounds, hospitalizations and infections could have been avoided, saving Medicare thousands of dollars, and myself and my family a lot of heartache. But sadly, the lymphatic system is barely studied in medical school at all. I think the unofficial statistic is that the average physician gets something like two hours of study of the lymphatics in four years of education. This really needs to change!
The Medicare regulations governing the treatment of lymphedema leave so much to be desired. It allows for less than $2,000 of physical/speech therapy COMBINED, and when a patient reaches that amount (which with the high price of health care, doesn’t take long!) they must qualify for the exceptions process or pay 100% of their treatment out-of-pocket. Medicare will only pay a trained OT or PT to treat lymphedema, which means that a massage therapist, a nurse, or any other medical professional trained in the treatment of lymphedema, can NOT be reimbursed by insurance.
Lymphedema is a very treatable condition, especially when diagnosed early, but it is incurable, and Medicare does not cover the cost of supplies needed by the patient in the home management phase of treatment. Let me repeat here, lymphedema is INCURABLE, which means that Phase II of the treatment is FOR LIFE. For example, I just paid OVER $1100 for one pair of below knee Circaids. I also have a second set that are thigh-high that I sleep in most nights. EACH of those was $950 out-of-pocket. Patients on Medicare are those who are either over age 65 or disabled. Many of us live on either SSDI or SSI, which means our incomes are very limited. The items we need to successfully manage our condition are expensive, and SHOULD be covered by our insurance, or what good is having it? These supplies are a critical part of the successful management of this lifelong condition and if the patient does not obtain the necessary supplies, treatment will ultimately fail, leaving the patient at further risk of infection with the need to repeat treatment time and time again. Each infection further damages the lymphatic system, and consequently worsens the swelling, which becomes more and more difficult to treat.
While Medicare does have an appeals process, it is certainly not very patient-friendly, and many beneficiaries would rather struggle to pay out-of-pocket or go without needed supplies than attempt an appeal. I, myself, with the help of our lymphedema advocate, have been successful in several appeals, but I cringe when I think not only of the expensive medical bills I’ve incurred over the years, but also at the cost of the appeals process itself, and all the personnel it takes. Wouldn’t it be so much simpler for Medicare to simply pay the claims to begin with and avoid so much heartache and inconvenience to so many? I think it would.
Please show your support of “The Lymphedema Diagnosis and Treatment Act of 2010” and help make Medicare and other insurances better and more efficient for us all.
