Santa Cruz, CA

One November night on 2011 I was at the gym and I noticed my right leg was swollen. I was 42 years old and working out regularly. Even though I was a life long fitness devotee I had arrived to a point where I was feeling like I was in the best shape of my life. My primary doctor had me make the rounds to my local orthopedist, vascular surgeon, and my local lymphedema clinic. I had x-rays, a CT scan, ultrasound, and blood test. I got no answers to the cause of the swelling. Knowing that I needed to search further I went to a prestigious university hospital and saw the top vascular and lymphatic specialist there. He told me,”I don’t know what’s wrong with you, but it won’t kill you.” He also told me that it was not usual to have some asymmetry between legs. And, then my swelling went away so I moved on with my life. The next few years of my life were very busy. I continued to work out but I avoid high intensity workouts. Little by little my right leg was swelling again but this time very gradually. In the beginning of 2017 I went back to the vascular and lymphatic specialist. I came with graphs of the daily measurements of my leg and with comparisons with the measurements to my initial swelling. I was referred for a venuous duplex ultrasound. When this came back negative he offered no further recommendations and my primary care doctor simply shrugged his shoulders. So, I flew to see a lymphedema specialist in Santa Monica. She diagnosed me with lymphedema tarda and gave me a prescription for compression stockings and a pump. I went back to my local lymphedema clinic to get fit for the compression stockings. When I asked about further therapy or 6 month check-ups the therapist said that I’d be fine just wearing compression and pumping each night. I followed the care protocols I was given. And I paid to get MLD therapy from a few different certified therapists in town and when I travelled. Even so, my leg especially my calf got bigger. I kept researching options and found a surgeon at the university medical hospital nearby who does SAPL. I saw her and she did all the tests I should have had years ago, the lymphscintigraphy, etc. And just last month I had 4 liters removed from my leg. Like many with primary lymphedema, I knew right away back in 2011 that something was wrong with my leg. It took much time and money to get to a diagnosis. And, even post surgery I am dealing with the gaps of communication and knowledge between therapists, surgeon, fitters and nurses. This might more exhausting than the condition of lymphedema itself. I am committed to staying active and being an advocate for those with lymphedema and other navigating our difficult health system. And I am very glad that LE&RN has started the Centers of Excellence program. There is much knowledge and commitment out there, but there are also very big gaps that some of us fall through.