Exercise Tips and Posts Living Life to the Fullest Primary Lymphedema Info

Overcoming 20 Debulking Surgeries As a Kid

As many of you are aware, I am the Admin for The Lymphedema Running & Fitness Club.  From time to time, someone will share a body transformation milestone in that group that will grab my attention. When I contacted Megan about sharing her story, I never dreamed that she would send me an email where I would read, “I have had 20 debulking surgeries as a kid.”  That doctors had told her parents she would never walk.  Wait. What?!  I was stunned and began to cry.  Based on her age, I deduced that the following applied to Megan, as the micro technology available to patients today in 2018 had not yet been invented.

Debulking Surgery

A more radical debulking procedure surgery involves removing all the damaged skin and fat down to the muscle and resurfacing the area with a thin shaving of skin from another area of the body, called a skin graft. This is an extreme measure used only for the most advanced cases of lymphedema.


Debulking surgery can pose a risk for:

  • Hematoma (bleeding)
  • Necrosis (death of the grafted skin)
  • Infection, chronic wounds or delayed healing
  • Blood clots
  • Scarring
  • Recurrence of lymphedema

Because debulking is an extreme and involved procedure, recovery time can take weeks to months in the hospital. Depending on your condition and how you heal, there may be a need for blood transfusions and additional surgeries.  Source: Northwell Health Plastic and Reconstructive Surgery


Megan is one of the most courageous individuals I have ever encountered in my groups.  Read on for how she took her life back from the debilitations of lymphedema and how amazing she looks today.  When I share a story like this, my faith and hope in all things regarding the power of the HUMAN SPIRIT and battling everything against all odds surges!  Thank you, Megan, for sharing this initimate, profound story and inspiring many I’m sure!!

Megan’s Story


My name is Megan, I am 43, and I was born with primary lymphedema in my left leg and foot.  It moved into my right at age 11, then in 2013, up to my chest after a surgery that removed 22 abdominal lymph nodes. I have had 20 debulking surgeries as a kid to help the swelling. (Docs told my parents I’d never walk.) I was stable for a very long time before the last surgery. After, with the additional swelling, I gained 50 lbs. I was having trouble getting around and started having intense pain. I got a cane and a custom brace. I was sad, and felt that my disease was taking over.

One day, I saw an ad for aquatic physical therapy. I had been in regular PT for years about every few months, but hated every minute as it was painful for me. So I asked my doc to write a script for aquatic pt. That decision would change my life.

I began with easy exercises, but they had a heated pool and an aquatic treadmill. Slowly (about 6 months) I was able to get on the treadmill. I started having hope again. I was able to move without pain in the pool. Somedays I was so grateful that I’d cry on the treadmill.

I never set out to lose weight or change my diet. One day the pool was closed for cleaning. My therapist took me to the reg gym, kicking and screaming. Lol. She made a program I could do with my limitations. I didn’t realize that my body had gotten stronger and was able to do more things.

After about 5 months, I was getting bored of both the pool and the gym. I saw an ad for an exercise challenge, but I was more interested in the type of class it was. I called even though I felt ridiculous because of my limitations. The trainer there said he would work around anything I could dish up, so long story short, I went. Shortly after starting, I decided to do an experiment with my diet to see what would happen if I tried to fuel my body properly.

After the six weeks, I lost 4% body fat, and went on to win the fitness challenge. Plus 300$ !!! I can’t explain to you, after being in pain for years, the feeling of winning anything to do with fitness, esp against “ healthy” non lymphie people.

I’m down over 30 inches, 35 lbs, and my swelling is down inches on both legs. I had to get smaller garments!


I feel better mentally then I have in a long time. I won’t say it’s always easy, I do still have chronic pain, wounds, infections, and fatigue, but its worth it. If you told me I’d be here now, I wouldn’t believe you . I now treat exercise like a PT appt. I know I need to go and do it to properly care for myself.

If I could share one piece of advice it would be to start where you are. Even in a chair, you can do something. I wish I knew that a long time ago ❤️

1 comment

  1. Megan has been a source of inspiration for those around her. She has touched many lives. Her journey was very difficult for her at a young age. Her peers would make remarks and taunt her. When she reached adolescence she had new challenges, ie: gym class, boys, trying to hide her legs. She put herself through college, while also working. She never wears anything that will display her legs. She has always been a delight to be around. Her humor her intelligence and of course her beauty are as her disease is, all part of what makes her the woman she is today. .

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