Learning and Sharing in Lymphedema Communities: From Boston to Seattle

Being involved in the Northwest Lymphedema Center (NWLC) and its community first as a patient, then as a volunteer, and now a board member, has provided the opportunity to keep abreast of current information regarding lymphedema that educates me not only on my own care, but inspires me to share what I am learning. I also view lymphedema care from the perspective of formerly being a practicing nurse and a teacher.

A few months before the Covid restrictions set in, I physically went to the 3rd Annual Lymphatic Patient Symposium in Boston (see my October 17, 2019 blog). During the program I found myself sitting next to Dr. Reid Maclellan, who is affiliated with the Lymphedema program at Boston Children’s Hospital. When I asked him if I was a candidate to be a part of the program even though I’m in my sixties, he replied, “Most certainly. Our oldest patient is in his nineties.”

What appeals to me about the Boston Lymphatic Center is that it offers interdisciplinary care as a Lymphatic Disease Comprehensive Center of Excellence, a designation conferred by the Lymphatic Education and Research Network (LE&RN). This center is a joint effort between Beth Israel Deaconess Medical Center and Boston Children’s Hospital, both of which are Harvard Medical School teaching affiliates.

The Boston Lymphatic Center is a collaboration. There is a team consisting of doctors, nurses, and therapists specializing in both the diagnosis of and treatment for lymphedema, non-operative and operative. The center also aims to “Improve treatments through clinical and basic research”.

Since I was diagnosed with lymphedema in 2010, there have been significant strides in the study of lymphatics as a whole, and in lymphedema in particular. Information and research are changing all the time. It is comforting to be in the care of a health care team on top of the most current treatment.

I made an appointment for May 2020. Due to Covid, the trip to Boston was postponed to June 2021. 

So this summer on June 9, I started my visit with lymphoscintigraphy, a gold standard for diagnosing lymphedema, of my right arm. The next day, I met with Dr. Arin Greene (co-director and co-chair of Boston Lymphatic Center), Dr. Reid Maclellan, Dr. Chris Sudduth, Mary Lou Sauro, RN and Anna Mak, PA. I spent about two hours at the clinic. Not once during that time did I feel rushed. The team listened to me and answered my questions and concerns.

Consulting with team members at Boston Lymphatic Center

One of the biggest revelations was the extent to which Dr. Greene emphasized that the most important regime regarding management of lymphedema is to maintain a normal weight and exercise. Surprisingly, he did not have weight lifting restrictions for me. I could lift weights and backpack to my level of comfort and ability. Muscle movement, he explained, moves the lymphatic fluid. He gave me suggestions for treatments and assurance that I could adjust my intensive management of my lymphedema without it getting worse. He recommended that I be evaluated every two years. 

Going to Boston was a long way to travel to get the care I needed. In the meantime, I’ll be doing more research about the new program at University of Washington, which is a Lymphatic Disease Network Center of Excellence with a particular focus on surgeries. Comprehensive treatment for lymphedema is expanding through the United States. Hopefully, in the near future, all lymphedema patients can find a specialist hub in their area for both diagnosis and treatment.

Join us to learn more! I’ll be watching and hope you will too!

First: On Saturday, September 11 from 12:30 to 1:30 p.m., Dr. Suzanne Inchauste, the new Director of the UW Lymphatic Disease Network Center of Excellence, will be presenting at the NWLC/Cancer Lifeline Support Group Meeting (on ZOOM) on medical developments and the work of the UW center.  REGISTER HERE

Second: On Saturday, October 30th, this year’s 2021 Boston Lymphatic Patient Symposium (4th Annual) is going to be a Zoom presentation for the first time and this opens up the possibility for all to attend virtually. Registration is open now, for a $70 fee. To see the agenda and reserve a place REGISTER HERE

Third: On Saturday, November 13th from 12:30 to 1:30 p.m., there will be a debriefing and follow-up discussion of the 2021 Boston Lymphatic Patient Symposium at the NWLC/Cancer Lifeline & Cancer Support Group Meeting (on ZOOM). So whether you can attend virtual conference or not, you can still participate. REGISTER HERE

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