A Patient Reflects on Harmony Hill Lymphedema Retreat

Five months after attending the Second Annual Lymphedema Retreat, I have returned to Harmony Hill with the question: What difference has it made?

Harmony Hill, a destination for Cancer Programs and Wellness Education (www.harmonyhill.org), is closed for another gathering at the moment, but I am staying nearby and will walk over again to retrace steps.  Discouraging casual visitors while in session is a reminder from the organizers that time is precious, as is the kind of quiet that comes with making a conscientious effort to reflect more than life normally allows. That the focus of such contemplation could be Lymphedema is remarkable.

The morning light over Hood Canal in the State of Washington’s south Puget Sound brings rays of sun beaming through a heavy mist. This place is a Pacific Northwest treasure.  The water is like glass reflecting boats at the dock. The sky peeks through the lifting fog as if a curtain was going up on this day.

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Hood Canal, Washington

Creating a Lymphedema Retreat at Harmony Hill has been the passion of Julie Venn, who is educated in manual lymph drainage and complete  decongestive therapy, as well as engineering.  Julie has served in programming and training capacities for the Northwest Lymphedema Center (NWLC)—one of the first patient support nonprofits in the United States dedicated to lymphedema. She is the owner of Custom Fit Therapies (www.customfit4you.net), and is specially trained for fitting a variety of medical compression garments and women’s intimate apparel including surgical/mastectomy bras, breast forms and wigs. She is also a Cancer Survivor with Secondary Lymphedema.

In a dynamic pairing, Julie developed the retreat format with fellow Patient Educator, Lynn Fass, a Registered Nurse and Certified Lymphedema Therapist who is Vodder School and Casley-Smith Method trained. Lynn is a true pioneer in lymphedema patient education, volunteering her time for over 20 years, including as current Board President of the NWLC.  Lynn has Primary Lymphedema in both legs and arms. She is  a former patient at the famous Foldi clinic in Hinterzarten, Germany.

Living a life with Lymphedema is often a solitary journey of perseverance. Even now in the developed world some of us fail to get properly diagnosed, although I would like to think that happens less so than was the case previously. You can imagine what an incredible experience it was to be at a retreat with over 20 others who have the same affliction and be able to hear their stories. I had lived for 30 years as a loner before meeting another person with lymphedema.

What happens at a Lymphedema Retreat?

Harmony Hill Retreat Center overlooking Hood Canal

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Harmony Hill is a place where specially trained facilitators and staff carefully attend to participant needs. Much of the food that is served comes from the organic gardens located in the middle of a scenic property that once belonged to the Nordstrom family. From hellos to goodbyes, every aspect of a stay on the hill is planned to assure as beneficial an experience as possible for each person.

Julie and Lynn combine their talents with the onsite professionals in delivering the retreat. Participants arrive by ferry usually from Seattle to Bremerton, and then with a drive south to Mason County along Hood Canal.  The weekend format then unfolds as an arc with a beginning, middle and an end where attendees come out at a very different place than they started.  Every Lymphedema patient has a story worth sharing. Attendees recount first noticing something was wrong through coming to terms with having the disease.  These conversations parallel presentations about practical measures designed to give fuller appreciation of lymphedema and how to manage it.

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Julie Venn, MLD/CLT

Topics such as biomechanics of the lymphatic system including watersheds, clearing, and pumping allow a better understanding of what is going on under the swollen surface that we see. Also important is learning about risk factors. Seemingly innocuous events like bug bites, skin infections, nail care, sun burns, and flying can turn into medical complications requiring emergency room interventions.  They can also trigger an irrevocable change in the severity of lymphedema.  Fully absorbing these facts sometimes takes a while to sink in. Hearing it for the first time is shocking. Hearing it for the second time helps to reinforce having to be diligent about care.  A doctor never told me these things.

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Lynn Fass, R.N., CLT

Some of what patients can do for themselves such as Manual Lymphatic Drainage —apart from regular visits to licensed lymphedema therapists—used to be revolutionary. Empowering self-care was the original idea behind the development of the Northwest Lymphedema Center and has been its hallmark. The trainers engage patients on a very personal level with the information and caring mindset that produces progress.  As Lynn shared recently, intervening to be able to change the trajectory of a lymphedema patient outcome remains enormously satisfying and still inspires her love of working with individuals and groups.

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Recovery from Total Knee Replacement in a Lymphedema Leg

Attending the retreat has definitely affected my healing. I arrived on crutches just four weeks out from a total knee replacement in a leg with primary lymphedema.  Anyone with lymphedema will relate to the fear of contemplating a permanently enlarged limb, and despite a sympathetic surgeon, no one could really tell what would happen. Now I am ably walking up Harmony Hill on this return trip, but not without a distinct change in awareness of what I now need to do to continually manage this condition. The retreat instilled and reinforced that knowledge.

What can happen after a Lymphedema Retreat?

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Labyrinth at Harmony Hill

At Harmony Hill there is a tradition of walking a Labyrinth under a distinguished old cedar to gain clarity. Several months after taking those first steps and attending the retreat, I was striding, with Lynn Fass on behalf of the Northwest Lymphedema Center and Elaine Eigeman, Board Chair of the Lymphedema Advocacy Group (LymphedemaTreatment Act.org), into an event I could never have imagined—the 25th World Lymphology Congress in San Francisco, sponsored by the National Lymphedema Network, (http://www.lymphnet.org) and other lymphatic organizations.  Amidst 850 medical practitioners, researchers, therapists, vendors, and patients, we learned about state of the art advancements in surgical procedures, drugs, genetics, treatments and products that are cause for incredible hope for lymphedema care in the U.S. and around the world.

With sincere gratitude, I thank Julie Venn, Lynn Fass, the Northwest Lymphedema Center, Harmony Hill and all other supporters for this healing initiative. I also thank fellow participants for their candor and humanity. What difference has it made? This retreat gave me an opportunity to profoundly live better with Lymphedema, and want to help others do the same. That’s life changing.

Laurie Macfadden Jones

As part of their vision, The Northwest Lymphedema Center and Harmony Hill shared financial responsibility for the Lymphedema Retreat—along with sponsors and other fundraising efforts so that participants could attend free of cost