Living With Lymphedema

November 6, 2015

In 2010, I began experiencing extreme swelling (edema) and tightness in my legs, feet and ankles especially in my left leg. My left leg became darker and I could create impressions when I pressed on my skin (pitting). I sit most of the time at work so the swelling worsened throughout the day. My socks became tight and uncomfortable, and it became difficult to put on my pants because the pant legs were too tight (primary the left leg). My doctor thought I was retaining water so he prescribed a diuretic but that did not resolve the problem. He then referred me to a vascular surgeon because he thought it could be an issue with my veins.

Diagnosis of Lymphedema

After a series of tests, on August 20, 2010, I was diagnosed with Lymphedema, a condition where the lymph nodes are damaged and the lymphatic fluid does not drain back into the circulatory system. The surgeon explained to me that there is no known cure, only treatment. It was devastating to hear the words “no cure”, I thought I was going to lose my leg! I was about 417 pounds at the time and was told that my obesity was the likely contributor. A few months later in 2011, I had gastric bypass weight loss surgery to help lose weight and I've lost 220 pounds.

In addition to that, my primary doctor referred me to a physical therapist trained in treating Lymphedema, along with sending me to get fitted for compression stockings. My therapist performed intense massages, manual lymphatic drainage (MLD), to my legs,  ankles and feet to relieve the collection of fluid. I was also taught how to properly take care of my skin by keeping it moisturized with lotion and to avoid cuts which can lead to an infection. The compression stockings brought me comfort and relief, within months I began to notice a difference and my legs began to look normal again. I later realized that only my left leg was damaged by Lymphedema. Most people cannot even tell the difference unless I point it out to them.

I believe that losing 220 pounds enabled me to better manage my Lymphedema, and helped keep it from worsening. Even though it is now under control and barely noticeable, there is no cure and I will always need to continue wearing my compression stockings to help manage the Lymphedema in my left leg.

I was fortunate that my Lymphedema was diagnosed early enough to begin treatment before it progressed into something more serious. If someone is experiencing extreme swelling, tightness and heaviness of the limbs, they need to go to the doctor and get it diagnosed promptly. Seek out a second opinion if necessary. If diagnosed with Lymphedema, there are treatments available and with proper care they could successfully manage this disease.

Resources and support for Lymphedema

I recently joined the National Lymphedema Network (NLN). Membership included a subscription to LymphLink. The magazine is published quarterly. The current issue focuses on surgeries for Lymphedema. There is an online support group at lymphnet.inspire.com. There is also a garment fund that assists people with limited resources in obtaining compression garments. My intention is to become more active in educating those with or at risk of developing Lymphedema.

Lymphedema Q&A

What is Lymphedema?  When the lymph nodes are damaged or removed, fluids in the arms and/or legs cannot drain the lymphatic fluid properly causing swelling (edema) and other complications. It can occur in men and women. There are several stages of Lymphedema. In the early stages, with proper treatment some of the symptoms are reversible.

What are the symptoms of Lymphedema?  The most common symptoms are swelling (edema) and tightness of the legs or arms. Lymphedema is often misdiagnosed. At first my doctor thought it was water retention then a vascular problem (veins not pumping blood properly).

What causes someone to have Lymphedema?  The lymph nodes become damaged by an infection, trauma, surgery and/or radiation (treatment for cancer for example). In some third world countries, extreme cases of Lymphedema are caused by a parasite infection. Being obese can damage the lymph nodes; however, Lymphedema patients come in all sizes.

What can someone do if they have Lymphedema?  Lymphedema is chronic so there is no cure only treatment and management. Once the lymph nodes are damaged they cannot be repaired. Seek medical attention early if you have any of the symptoms. Early diagnosis and treatment can make this a manageable disease!

What are the treatments for Lymphedema?  

• Lymphedema risk increases with obesity, weight loss should be a part of Lymphedema treatment in overweight individuals.
• Physical therapy from a licensed Lymphedema therapist. Treatment includes specialized massages to manually drain lymphatic fluid.
• Keep the affected body parts well moisturized and avoid cuts and bruises which can lead to infections.
• Compression garments/stockings.
• Elevating the affected body parts as often a possible can relieve and control swelling.
• Exercise.  Aerobic, flexibility and strength training are usually recommended. A Lymphedema therapist will provide exercises to do at home to improve circulation and naturally drain lymphatic fluid back into the circulatory system. Speak with a doctor before starting a regular exercise program.

Can someone have a surgery to remedy Lymphedema?  There is no cure for Lymphedema but there are some surgeries that can drain excess fluid and tissue to help cosmetically and to manage Lymphedema. For example, Vascularized Lymph Node Transfer (VLNT) surgery transferring healthy lymph nodes to the Lymphedema affected body part.

If you have Lymphedema, you aren't alone.  There are many people that have Lymphedema.  ObesityHelp recognizes that Lymphedema is an issue many members of the bariatric community struggle with.  Check out the Lymphedema message board.

ABOUT THE AUTHOR Kevin Stephens had RNY surgery in 2011 and lost 220 pounds. He shares the story of his journey during bariatric support groups at his local hospital. He is now into fitness training and aspires to complete a 5k walk and/or run in the near future. Kevin is a member of the National Lymphedema Network (NLN) and the Obesity Action Coalition (OAC). Read more articles by Kevin!

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