Martha’s Story

by Heather on April 23, 2011

In 1986 at age 45, I had a lumpectomy of the right breast and the surgeon removed 44 lymph nodes—all of which came back “clean”.  That was followed by 6 weeks of radiation therapy. I was not told of the possibility of developing lymphedema and/or cellulitis due to the compromised lymph system.  About 3 years after surgery I first developed cellulitis, which was treated with antibiotics.  Since that time I have had numerous bouts with cellulitis due to lymphedema.  Several times I asked my doctor about what could be done for lymphedema and the frequent bouts of cellulitis.  He didn’t have an answer for me.  One time, though, he indicated that some people wore compression garments to keep the swelling under control.  He added that wearing these sleeves was cumbersome and bothersome, but didn’t suggest any treatment.  So, for many years after surgery I did not have any treatment for the lymphedema.  However, my sister sent me some information about the condition shortly after my surgery.  Elevating the arm to reduce swelling and fluid accumulation was one of the suggested remedy for lymphedema, along with not sleeping on the affected arm, and not carrying a purse on that shoulder.  This only helped for a short time.  As the years passed, the lymphedema became worse.

About 5 years ago (2005), I was on a camping trip and had hiked around a small lake.  When I got back to the campsite I noticed that, not only was my arm involved, but now I had a large swollen “bubble” on the back of my hand.  I was able to get the fluid drained by elevating my arm for several hours. 

This prompted me to search the internet for information about lymphedema and possible treatment for the condition.  I found Dr. Joseph Feldman from Evanston hospital in Illinois and set up an appointment.  He educated me more during that appointment than I had learned about the condition in the previous 20 years.  I was treated using the manual drainage and bandaging of the arm for a few weeks.  At the conclusion of this phase of the treatment by a LANA certified physical therapist, I was taught how to do the manual drainage on a daily basis at home.  In addition to this continuing treatment, I wear a class II custom made compression sleeve, occasionally a compression glove for the hand as it swells sometimes, and the Tribute sleeve at night.  Dr. Feldman indicated that sometimes a person has to continue the bandaging at night.  The compression sleeve needs to be replaced approximately every 6 months.

Since my treatment started and through taking a therapeutic dose of antibiotics daily, I have greatly reduced the incidence of cellulitis—just short of the 3 year mark of no cellulitis.

During the initial phase of my treatment my husband’s union insurance plan (BCBS as administrator) covered a portion of the expense.  When Medicare became my primary insurer in January 2006, only a portion of my doctor visits was covered, but never any of the compression garments.  However, BCBS (now my supplemental insurance, still the TPA of the union plan), has continued to pay a portion of the expense for compression garments, which I understand is very unusual according to Dr. Feldman.

At this point in my life I am physically able to do most everything I did before.  However, I am more cautious about avoiding scrapes and cuts, always wear gloves when gardening, and avoid heavy physical activity.  Buying long sleeved clothing is an issue, because the right arm will never be normal size.

{ 1 comment }

Fallon Gean May 7, 2011 at 6:44 pm

It’s really a nice and helpful piece of information. I’m glad that you shared this helpful info with us. Please keep us informed like this. Thanks for sharing.

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