Safely Compressed - One Lymphedema Patient's Story

This is the story of why I love my compression garment. For those of you who have worn compression garments, you may question the use of the words ‘love’ and ‘compression’ in the same sentence, but bear with me. I was diagnosed with primary lymphedema in my left arm 13 years ago, around age 45. It was, more or less, a diagnosis of exclusion. It was not cancer, or a problem with my veins or arteries, so it was concluded that the problem must be lymphatic. Our lymphatic system is a network of tiny vessels and nodes located just below the skin, which circulates a protein rich fluid called lymph. This fluid plays an important role in our immune system, helping target and remove bacteria. Normally lymph fluid is circulated by slow contractions of lymph vessels along with additional pressure from surrounding muscles. In the lymphedema patient this flow of lymph fluid is disrupted, leading to pooling of the fluid and chronic, progressive swelling in the affected areas. At the time of my diagnosis my left arm was noticeably larger than the unaffected right side. 

The diagnosis of lymphedema came as somewhat of a relief after a prolonged period of uncertainty. However, it did not come with any practical information on how to manage the condition, the need for lifestyle changes, available treatment, warnings, etc. Consequently, for the first ten years post diagnosis I just had to put up with the discomfort and impacts on daily life. These are symptoms some of you may recognize - pain, heaviness, reduced range of motion and disrupted sleep. In addition to these inconveniences, a couple of years post diagnosis, I started to suffer from periodic bouts of cellulitis. Cellulitis is an infection of the skin layers, not uncommon in elderly or infirm patients, but which can be dangerous, particularly in people with lymphedema.

Fortunately, I had done some personal research on lymphedema so the first time I developed cellulitis, I recognized it and dragged my feverish self to the ER. Problem solved, right? Wrong! Nine months later another infection. After that, yet another. I was fortunate that, due to prompt attention, none progressed to the point of needing hospitalization, but I became increasingly wary of risks of wandering too far from medical help. What I needed was instruction on how to prevent infections, but because primary lymphedema is uncommon, I was falling through the cracks of the medical system. 

Fast forward to April 2018. While travelling for work, I became very ill from an unrelated cause, ending up in the ICU. During this stay hospital staff worked hard to control my illness, but while hospitalized a particularly difficult bacteria invaded my lymphatic arm. This time the cellulitis that followed was very difficult to resolve and resulted in a dramatic worsening of my lymphedema. When I look back at this now it was sort of a blessing, as this deterioration finally led me to search for resources outside of the public health system, including most importantly the Lymphedema Association of Newfoundland and Labrador (LANL). They helped me locate the specialist treatment and help I needed, resources which other health professionals ‘inside’ the system may not have been aware of (Medical/nursing students receive less than an hour of educational material on lymphedema during their programs!). After undergoing manual lymphatic drainage by a Certified Lymphedema Therapist, I was finally fitted for a compression sleeve. Well, WHAT A DIFFERENCE! No more twisting and turning trying to get comfortable at night, no more holding my arm up while walking to keep it from aching, but the biggest change of all -- no more infections! The sleeve not only works to keep the swelling down, but it protects my arm from those tiny nicks, scratches and pricks that used to lead to cellulitis. 

Is it uncomfortable? Yes, a little bit. Is it stylish? Well perhaps not, but there are options. Has it saved me from many bouts of cellulitis? Undoubtedly! Do I now travel still with caution but with less concern? Definitely. Do I sleep easier, have less pain, more movement/capacity to do more things? Yes. Do I love my compression? You bet I do!

My membership in LANL has given me some of the tools I need to guide me on my lymphedema journey. They offer Support Group sessions, and educational materials in newsletters and on their website. Before Covid, they held Public Forums where both patients and health care providers attended. They created a Cellulitis Card that I now carry with me at all times. This card tells health professionals that cellulitis in people with lymphedema needs immediate medical attention!! Also as a member I receive the national lymphedema magazine, Pathways, which is full of great information and ideas as well (for both patients and health care providers). For the past three years, I have been proud to serve as a Board member of LANL.