On September 13, 2013 in the early evening, our family’s life changed dramatically. My 9 year-old daughter Sarah, said, “Mommy, look at my ankle.” I could see it was swollen and called the doctor’s office immediately. Our pediatrician told me to take her to the nearest emergency room because it might be a blood clot. At 1 a.m. in the morning we were sent by ambulance from Holy Cross Hospital to Children’s Hospital.
Sarah spent three days there undergoing numerous tests. A scintigraphy a week later confirmed the diagnosis of primary lymphedema–no lymph node activity at all in her right leg and foot. Sarah said that the scintigraphy was the most painful experience in her life.
We saw a vascular specialist, who gave us no guidance in buying compression hose and could not refer us to a physical therapist. We asked for a second opinion and he recommended that we go to Boston or Cincinnati Children’s Hospital.
On December 10, we met with two doctors and a compression specialist in Cincinnati. The doctors said that her condition would last for the rest of her life. We could only try to make it a little better through maintenance. Untreated, it would definitely get worse and might lead to cellulitis.
When we returned home, I found a nearby physical therapist , who recommended a better local lymphedema doctor and a compression specialist.
Sarah now has $500 hose, a $500 toe guard, a $3,000 night guard, and a $10,000 pump she uses for a half hour to an hour a night. We are on our eighth pair of hose for the year. Even with our excellent insurance, we’ve spent $5,000 out of pocket. We have incurred $30,000 in covered expenses. Most people are not as lucky with their insurance coverage. Without insurance, maintaining the lymphedema would be financially impossible for many people.
Despite all this care, Sarah’s swelling which goes from the top of her hip to her toe is getting a little worse, especially because of the summer heat. Her right leg is 2 inches bigger than her left. Her pants tear and split and her shoes squeeze her feet. She missed 11 days of school and was often late because of appointments and physical therapy. She has a cardboard box at school for elevating her foot. One of the boys in her class made fun of her and we had to call the assistant principal. Next year, we’re applying for a 504 (disability plan) so she can always have her leg elevated at school.
Sarah has been amazing about the whole ordeal but sometimes she says that the “lymphedema is running her life.” I don’t understand why Sarah has this disease, that came from out of the blue, which so unknown.
