Hello. I’m glad you are interested in my lymphedema story. I am a 79-year-old female. When I was 10 years old, about a year after my family moved from England to Toronto, I began to menstruate, which was pretty early for girls in 1951. I noticed that my feet and ankles began to swell at that time, which I found very embarrassing. I thought it might have been due to the humidity in Toronto’s summer, versus that in England. My mother was suffering from depression and, perhaps, from the lymphoma that took her life a few months later, so she did not pay attention to my issue. It was not just my lower limbs that were swollen but all parts of my body, especially my fingers, hands, and breasts. The swelling was painful and I think it contributed to my depression, which was, at times, severe.

Several years later a doctor sent me to an endocrinologist who recommended thiazide diuretics, which I took for decades, although that is not regarded as wise now. A second endocrinologist also recommended diuretics. I recall he said, “If my daughter was as swollen as you are, I would prescribe the same treatment.” I was still swollen while taking diuretics but I assumed the swelling would have been worse without them.

In my 60s a doctor switched me to a different diuretic, amiloride, but later, because of my age, recommended that I cease taking diuretics altogether, which I did. This caused me to gain 8 pounds. I continue to have lymphedema that affects my entire body but especially my legs, feet, and ankles. I find that, the higher the relative humidity, the worse the swelling, so I suffer more pain in summer, even now that I live in Tucson, Arizona. My doctor wanted to send me to a physician who specializes in lymphedema but that person was not accepting new patients and still doesn’t.

I am at high risk for breast cancer for several reasons and have had two surgical biopsies. The most recent removed a lymph node. I am worried that further removal of lymph nodes would cause additional lymphedema.

I have never been able to wear high heels. Generally, I wear Birkenstock clogs or sneakers for all occasions and always wear pants, not skirts. I have worn 30-40 mmHg compression socks for many decades. I have tried several brands but only one brand and style fits me because, while my calves and ankles are large, my feet are not long and my legs are short. These socks cost me $65 a pair that no insurance covers. It is not right that patients who require assistance, such as pumps, should have problems paying for essential equipment.

I have seen photographs on the internet of people who have far more extreme lymphedema than I have, so I am grateful that my case is not worse. Nevertheless, I wish the medical profession took more interest in this disease as it has negatively affected my physical, social, emotional, and financial life.

Sincerely,

Susan Klement
Tucson, Arizona