I would first like to say that I am always grateful to be given any opportunity to talk about lymphedema and its care. I acquired lymphedema in 2005, having had a severe parasitic infection (schistosomiasis), which went undiagnosed for three years. The infection caused the enlargement of my inguinal lymph nodes on the right side of my body, with subsequent scarring of those nodes. Prior, I had worked as an Occupational Therapist for nearly 10 years in a hospital based setting. I tell you this because even though I worked in a hospital, closely with many Doctors, I could not find one single clinician who knew anything about lymphedema. I was astounded to say the least. I even had one Physician that I worked with tell me I must have sprained my ankle.
So, me being the tenacious person I am, I set out on a journey to learn as much as I could about lymphedema and its treatment. I can tell you that in the beginning, I received some very poor care. I went through the traditional complete decongestive physiotherapy (CDP) protocol for lymphedema, and came out with my leg more swollen than when I began. When I questioned the therapist about this, she gave me the name and number of a massage therapist who sees ‘difficult’ patients. I made my appointment with this therapist for an evaluation, and I have never looked back. This person, for lack of a better term, became my lymphedema guardian angel! Having Lymphedema (LE) I have come to find, requires an enormous amount of time, energy and attention. When following all guidelines, patients can spend hours a day completing self lymphatic drainage, exercises, meticulous skin care, and washing and caring for their compression garments and compression bandages. It is at first an almost insurmountable task. Even for me, with my therapy background, I felt completely overwhelmed. The only thing which has carried me through all of this is knowing that I have a support system via Liz Olivas (the LMT guardian angel mentioned above).
The most important part of caring for LE is what comes after your course of CDP. The need for aftercare is tremendous. The daily ins and outs of handling all the problems which seem to pop up can make any sane person crazy. Realizing this prompted me to once again further my knowledge. I decided that I wanted to become certified to treat LE, and then set out to pick coursework which I felt most closely matched my belief systems and my ideals as an Occupational Therapist. After much research, I decided to begin the certification process with Dr Bruno Chikly’s Lymph Drainage Therapy coursework. I chose to study Dr Chikly’s work over all others for one very specific reason: manual lymphatic mapping (MLM). In my estimation, this was what had been lacking in the initial treatment given for my LE. If the pathway the lymph was taking in my leg could be palpated, then I knew I wouldn’t be pushing it in a direction it did not want to go. Needless to say, I was extremely excited about the prospects for this new educational journey.
I completed LDT I, II, and III over a period of two years, and then took and passed the LDT Lymphedema/CDP Certification Level 1 class and test. Along the way I met some amazing therapists, some of which are now great friends. To say that I am satisfied with my decision to study this coursework would be a great understatement. I have learned an enormous amount not only about treating patients who have lymphedema, but also about myself and my LE. I am proud to say, the manual lymphatic mapping skills helped me to recognize the alternate pathway my body was using to drain my right leg. With this knowledge, I have reduced the edema in my leg to the lowest level it has ever been. I am no longer pushing the lymph into a non-functional direction, and it changed my health immeasurably! The MLM was the key to making the drainage of my leg much more functional.
Now getting back to aftercare. When I took the LDT classes, and during my time as a teaching assistant for the courses, I noticed a somewhat reoccurring topic. Quite a few massage therapists were debating whether or not to continue through the coursework and complete their LLCC certification. Because Medicare does not reimburse for lymph drainage therapy (LDT) given by a massage therapist, they did not see the point in pursuing this avenue. I must tell you that I was very distraught in hearing this. It is vitally important that we have as many therapists as possible educated in the treatment of lymphedema. I have explained to these therapists over the years that even though Medicare may not pay you for LDT treatment, there are lymphedema patients out there who need your skills and will pay you out of pocket for them. I am a prime example of this. The person who has helped me the most in taking good care of my LE is a massage therapist. While she is not trained in the Chiky LDT method, she is a Vodder trained therapist with 25+ years of experience treating LE. She has taken some of the Chikly coursework in addition to Vodder, and uses the manual lymphatic mapping skills in her practice. Her clientele at one point were exclusively people with lymphedema. I want to assure you that you will have the caseload you need, and that these people will seek you out for your specialized skills. Medicare only allows a limited number of treatments for LE, and once that’s used up, patients are left hanging. I cannot emphasize enough how important it is for us to have highly trained and knowledgeable professionals who can help us take care of our lymphedema for the rest of our lives.
While this path has not been an easy one, I have learned an enormous amount about myself, and have met some incredible therapists along the way. I realize it is critical for me to continue being diligent with my self care, and treatments for my LE. This is the only way I can insure my long term health. My hope is that those who are considering continuing on and completing their LLCC certification will do so, for all of us out there with lymphedema who need you!