Life with lymphedema

Today, March 6, 2020, is World Lymphedema Day. Below, Sandy Henschel, an OHSU patient, shares how this condition has impacted her life in her own words. 

What is lymphedema?

Lymphedema is defined as swelling in an area of the body that is caused by a blockage in the lymphatic system. People who are born with lymphedema have what’s known as primary lymphedema. Secondary lymphedema is most commonly caused by lymph node removal or damage due to treatment for cancer.

Lymphedema often affects a person’s daily activities, sleep, personal relationships, ability to contribute to society and psychosocial well-being.

It’s chronic. There’s no cure. And conservative treatment doesn’t always work.

My story

As of this writing, I am grateful to be cancer-free for eight years. I began noticing symptoms in my left leg approximately two years post-treatment for aggressive uterine cancer. My daughter and I had taken a trip to Costa Rica in the summer of 2014 and after we arrived, she became alarmed when she noticed that my leg was very swollen.

I sought immediate care upon my return to Oregon. My physician sent me to the hospital for an ultrasound to rule out a blood clot. No blood clot was found – instead, I was diagnosed with secondary lymphedema. I had no idea what lymphedema was, nor how lymphedema is managed. I quickly discovered that my life would soon revolve around the daily and nightly maintenance of lymphedema.

My daily routine

Listed below is my daily checklist I use to manage my lymphedema:

  • Remove my nighttime compression “boot” from the left leg
  • Struggle into my thigh-high compression stocking
  • Dress in pants that are made of a material that stretches to accommodate my swelling leg
  • Fill up a large water bottle to consume lots of water throughout the day
  • Avoid foods that cause inflammation
  • Move around as much as I can during my workday
  • Exercise daily, including jumping on a mini-trampoline to help my lymphatic system
  • Use one of my two different lymphedema pumps for at least 1.5 hours daily
  • Take a bath with lots of Epsom salts before bedtime
  • Put on my nighttime compression “boot” before getting into bed

Life with lymphedema

The doctor-recommended treatment for lymphedema is costly in terms of dollars spent on maintaining and improving lymphedema.  The personal management of lymphedema is also very time-consuming. Compression garments are very expensive (even for those lucky enough to have medical insurance coverage). People with lymphedema have to continually replace many clothing items that no longer fit, as our swelling changes over time. Lymphedema has cost me my former full-time career, as swelling and fatigue restrict me to working no more than 30 hours a week.

People with lymphedema can experience anxiety and we are very protective of our lymphatic appendage when around mosquitoes and other stinging or biting insects, poison ivy, poison oak, stinging nettle, barbed wire, thorny rose bushes, cats, dogs, etc. This fear is due to our high risk of infection when our lymphatic appendage is scratched, punctured, stung, or cut. I always carry an antibiotic and topical antibiotic cream with me in case I am scratched, bitten, stung or cut.

Lymphedema is very visible. People who have no knowledge of lymphedema will often ask me, “why is your leg so big and swollen?” or, “what is that device that you’re wearing?” Even though I can be embarrassed by my lymphedema-affected leg, I am always open to educating people about lymphedema.

A brighter future

Until the last couple of years, there weren’t any long-term surgical treatment options for Lymphedema. However, now that OHSU has added Dr. Allison Nauta to their team of physicians and surgeons, she has given me hope that I may be an excellent candidate for lymphatic bypass surgery, a microsurgical procedure that she is highly trained to perform. Although this surgery does not cure lymphedema, it would significantly reduce both the swelling and my risk of infection.

I am very optimistic about looking toward a future with better treatment options for lymphedema (and hopefully a cure).

Note:

The photo shows me with a wild bird perched on my shoulder.  During and after my cancer journey, I often have personal encounters with wild birds landing on my shoulder or hand and sometimes rare birds will show up in close proximity to me.  They seem to pay a personal visit when I need comfort and reassurance.