The following stories are written by the project facilitator, the project team, and others. Each of us has lymphedema and we share our experiences from early symptoms, to diagnosis, to treatment, and day-to-day management.
I was diagnosed with lymphedema about 2 years ago. It started with a swollen right ankle, which I attributed to having injured it 3 times in 8 months. After a flight, my entire leg was swollen. I went to my primary care physician who prescribed diuretics. They didn’t work!
About a month later, I was having my routine exam and the gynecologist asked what was “wrong” with my right leg. She referred me to an Interventional Radiologist, who did a number of tests and then a procedure that resulted in placement of a couple of stents because of blood clots in my iliac vein. Most likely the clots resulted from radiation because of endometrial cancer – but that was 4 years earlier.
By this time, I’d suspected lymphedema and had done some research on it. It’s not well known in the healthcare community, despite the fact that some 10 million Americans have it!
At my follow up visit, it was apparent the IR physician was disappointed that the swelling of my leg hadn’t gone down. I asked for and was given a referral to a Certified Lymphedema Therapist. What a miracle! The CLT gave me some treatment options but most importantly, she was my cheerleader. She educated and encouraged me. It was such a relief to be doing something about this condition.
I sought help from any possible source and found Inspire, a website devoted to supporting individuals with a variety of medical conditions. I joined the National Lymphedema Network and began reading every post. I found so many individuals with similar histories, concerns, and treatments and learned so much about caring for my lymphedema.
I felt like I finally was able to deal with this condition and its effect on my lifestyle. But that was an illusion, unfortunately.
After finding a wonderful, supportive CLT, and doing a significant research, the physical aspects were pretty much under control. I realized I was beginning to experience the emotional aspects of lymphedema. I felt like crying a lot; everything was just too much – know the feeling? My CLT referred me to a therapist. She was practical and empathetic. She helped me accept lymphedema as an alteration to my lifestyle and its management as part of my daily routine.
The journey’s not over – lymphedema is part of my daily life from waking to sleeping. It consumes a great deal of time every day and is the focus of my daily activities. I have really good days and some really bad ones still. I’ll share my experiences with you in the hope that you will find some help, encouragement, and support as you or your loved one travels a similar path.
Belinda E. Puetz, PhD, RN
Gulf Breeze, FL