I have a the perspective of being both a healthcare professional and a patient. My lymphedema story began initially back in 2000-2001; that’s when I first noticed unexplained swelling in my left leg but not my right. It began as just the visualization that my left calf, ankle and foot were noticeably bigger than my right, and had persistent pruritis (itchy skin). When I brought this up to my primary care physician initially, she prescribed benadryl and told me to follow up if the condition didn’t improve.
The swelling neither went away nor got any worse, and the pruritis improved with the benadryl treatment. This condition remained unchanged for over 8 years, and then in 2009, my right calf, ankle and foot also began to swell and itch, not in an alarming manner, but gradually. As the year progressed, my legs continued to swell, including my thighs, to the point that my trousers began to get tighter and harder to get on and I experienced increasing difficulty in bending my knees, climbing up into my truck, etc. In addition the pruritis began to return. I had lost hope that my doctor could figure out what the problem was. I began to notice yellowish stains on my socks and figured out that fluid (which I figured out was, indeed, edemic lymphatic fluid, was periodically oozing from my pores. It was frustrating, annoying, and depressing. Finally one day at work in the Operating Room, one of my colleagues told me I had blood on the back of my scrub pants behind each of my knees. I went to the locker room and sure enough, I was bleeding from both of my popliteal (behind the knee) spaces. This was the last straw, I had finally had enough.
I saw my physician again, and she ordered a variety of lab tests, X-ray studies, CT scans, and ultrasounds. They looked for all kinds of diseases and conditions. Results kept coming back negative. She referred me to a vascular surgeon to diagnose possible vascular problems such as DVT, venous insufficiency and varicose veins; several more ultrasound and Doppler studies later, I met with the surgeon. My diagnosis was not any of the above conditions, but rather bilateral lower extremity lymphedema (which I’d never heard of) with exacerbation of my plantar fasciitis. The surgeon then told me he couldn’t help me, that it was a failure of the lymphatic vessels in my legs causing accumulation of lymphatic fluid and excessive swelling for which there was no surgical intervention possible and no cure; that, in fact, the only treatment was massage, compression wraps to reduce the swelling, regular lymphedema therapy, and permanent compression garments and intermittent devices, along with non-stop personal vigilance and skin hygiene for the rest of my life. He referred me to the Lymphedema Therapy Clinic.
It took me 5 weeks of treatment, 3 times a week, including massage therapy, skin hygiene and toe to upper thigh wraps of both legs to get my leg edema reduced to my normal baseline. I was then told I needed to either do self wrapping at home, or get compression garments. I tried self wrapping, but was a dismal failure and my wife was not much better. We (my therapists, my wife and myself) all concluded that the compression garments were mandatory, the only effective treatment in my case. After standard “off the shelf” garments were not effective and did not control my lymphedema, forcing more therapy sessions and wrapping, we knew the only answer for me was custom-fit compression garments which were/are significantly more expensive. Luckily, my insurance covered most of the cost and I only had to pay approximately $90 per each pair of garments (two are required, one to wear and one to wash, as you must wear a fresh clean garment every day, 365 days a year). It should also be noted that garments need to be replaced every 12-18 months maximum, as they lose there effectiveness with time and usage.
One of the major complications of lymphedema is a susceptibility to major infections up to and including cellulitis and erysipelas, both of which can if untreated cause very serious sepsis problems , in heart valves and also lead to organ failure and death. Even the smallest break in the skin can rapidly lead to grave problems. As a result, I have to be exceedingly careful and vigilant about my skin hygiene. Even with my best efforts, I have had serious infections and complications. Just in the past 7 years, I have had 6 hospitalizations ranging from 5-8 days with multiple expensive IV antibiotics needed, as well as other treatments, followed by outpatient lymphedema therapy sessions and oral antibiotic courses of treatment ranging as long as 3 weeks post-discharge. The costs for these hospitalization ranged between $37,000 -over $80,000 not counting the lymphedema therapy sessions which were several thousands more, plus the costs of the antibiotics. Luckily, insurance paid for most of these costs, however, it was an outlayof healthcare dollars regardless of whether it was my money or the insurance company’s expenditure.
At the age of 64, I was laid off and unable to find work in my profession, despite very diligent and exhaustive efforts. I concluded that regardless of impeccable credentials and references I would not find work in the Metro area I lived do to age discrimination which I could not prove but had much circumstantial evidence to back up my belief. After exploring Medicare vs coverage under my wife’s insurance policy (she is 21 years younger than I), I chose to use her policy for my coverage as it provided much better and less expensive healthcare.
Imagine my surprise, in 2014, when, after a bout of lymphedema which required therapy sessions to stabilize me and get me back to baseline normal, I discovered after ordering my new garments, that my wife’s provider, United Health Care, via her employer A T & T, did not cover the costs of any lymphedema compression garments. At that time I required tip of toes to mid thigh custom-fit garments, which had increased in cost to $1500, and in this case, as I needed 2 pair (one to wash and one to wear) for a total of $3,000. This was almost all my retirement fixed income for an entire month! I was shocked, dismayed and in a panic. I made a quick check into Medicare and found out that Medicare also did not pay for compression garments for lymphedema therapy treatment. I was numb and appalled. I thought of all the poor people who had no insurance or could not afford the costs of these garments. It made/makes no sense to me. Medicare and Insurance companies will pay for expensive lymphedema therapy treatments and even much, much more expensive hospital stays but will not pay for garments which are absolutely mandatory for this disease and can contribute greatly towards reducing hospitalizations. This is illogical and asinine. The manager of the business I was working with to get my garments told me about Lymphedema Treatment Act, and I joined the organization and proudly support it’s efforts on our behalf.
Lymphedema patients need the same kind of protection and treatment as any other serious condition such as cancer or heart disease. We need the Federal Government to stand up for us and mandate that ALL health insurance providers AND Medicare pay for all compression garments (including custom-fit garments). I VERY STRONGLY urge the passage of the House and Senate bills and the final version of the Lymphedema Treatment Act.