Lymphedema is defined in the dictionary as a “localized swelling of the body caused by an abnormal accumulation of lymph.” That sort of reads like another language to most people. The lymph or lymphatic system is part of your immune system. At it’s most basic level, the lymphatic system is composed of lymph nodes and lymph fluid. It works sort of like a filtration system for bacteria and viruses and does not have a pump that moves the fluid around your body in the way the heart functions for the circulatory system. Every move that you make helps the lymph system to circulate fluid.
There are two types of lymphedema; primary and secondary lymphedema. A person is diagnosed with primary lymphedema when there is no known, identifiable condition that contributes to the swelling. Sometimes, the lymph nodes are just not able to handle the fluid. Secondary lymphedema occurs as a result of some type of trauma to the lymph system. It can occur anywhere there are lymph nodes in the body including most often, arms and legs.
I was diagnosed with secondary lymphedema as a result of the removal of approximately 15 lymph nodes from my left arm-pit during my bi-lateral mastectomy as well as scar tissue that accumulated from reconstruction and radiation. It is something that I noticed within about a month of my surgery in September 2012. After surgery, mastectomy patients are referred for physical therapy. Due to restrictions in movement for as long as 6 to 8 weeks, physical therapy can help regain that movement. I spoke with the therapist about the feeling in my left arm and she diagnosed me with lymphedema. I had no real idea of what that was and what the potential impact could be on my normal activities. I was prescribed a compression sleeve and advised that my insurance would cover 2 of them every 6 months. Care for those sleeves is hand washing and dry flat.
Wow. Wear this sleeve during the day, every day to prevent further issues. I was a single mother with 3 daughters. I didn’t have time to hand wash anything, much less allow the time for it to dry! I googled compression sleeves and realized that they were at LEAST $70 each. Again, I was a single mother with 3 teenage daughters who could afford that!
A few years later, I had re-married, moved to another state and was moving forward. The lymphedema hadn’t been too bad, I had gotten used to (sort of) having to wear a long sleeve in the summer with all of the humidity and heat and was not feeling limited in my daily activities. I had always been fairly active, walking a lot and enjoying outdoor activities. One Friday, my husband had come home from work late and found me lying down on the sofa, just not feeling too great. His description was that I basically looked like I had melted. I sort of felt like I had a headache, maybe a slight fever but I also had noticed that my left breast was a bit inflamed. After doing a google search, (never a good idea) I decided that not only had my breast cancer returned, it had returned as inflammatory breast cancer. I wasn’t quite 5 years out so of course, I felt like I was going to die.
I do happen to have an unusually high tolerance for pain and discomfort and in this case, it was compounded by the surgery and reconstruction leaving me with no feeling in that area so I did not have any type of warning that there was an issue there. I learned that night at the emergency room that a very common side effect of lymphedema is cellulitis. Cellulitis is basically an infection that causes inflammation. It spreads easily and can eventually lead to death in extreme cases. Over the next three years, I was admitted more frequently to the hospital for treatment of it. I wound up on home IV and was taking antibiotics in what was called a “maintenance dose” which just means that I had to take it every day.
I was not very happy with that thought of having to take antibiotics every day for the rest of my life, especially with everything that you read in the news now about antibiotics being less effective the more they are used. At that point, I started researching the condition. I learned that most doctors don’t know much about the lymphatic system and how to handle it.
My last stay at the local hospital , my infectious disease doctor told me she no longer had any idea what to do. I had been on the maintenance dose of antibiotics and still came down with cellulitis that needed IV therapy. My husband and I found a doctor that was close by, at Georgetown Hospital that had been performing surgery that helped to manage the symptoms of lymphedema. There was no cure, but this was hopeful for management of this condition. I basically left the hospital and headed directly over to meet with Dr. David Song to see if I was a good candidate. I explained to him the symptoms I had, chronic pain in my left arm, a sore and full feeling in my shoulder and under my left shoulder blade. He assured me that those were all common complaints and that he would be able to help me to alleviate some of those symptoms.
Finally, some relief! He advised me that although I felt that the lymph node transfer surgery was necessary, the insurance companies considered it elective surgery and that I needed to be very careful and not even get a cold before it. So my husband and I began wearing a face mask even before it was cool! Dr. Song performed the surgery in April 2019. Since then, I have only had cellulitis twice. I was able to handle the issue with a normal course of oral antibiotics. No more trips to the hospital so far. For me that is a total victory. I had gone from being in the hospital 3 or 4 times a year to being able to handle cellulitis at home.
One thing that I learned during my journey through lymphedema and cellulitis is that most insurance does not cover the cost of treatment to manage lymphedema. That leaves many people susceptible to more serious illness in a time when no one wants to be in the hospital. Compression garments are just a small part of the treatment process but Medicare and Medicaid do not cover those garments. That is one of the reasons that Love of Lisa Cancer & Lymphedema Fund was started. We can help you with that cost.
Another way to help is to reach out to your local political representative and ask them to pass the Lymphedema Treatment Act. It requires an act of Congress to make changes to Medicare and it is waiting to be introduced to the 117th Congress. Please act quickly so that we can lessen the financial impact for so many.