Lymphedema -- James's Story

Many people suffer from lymphedema. I am one of them. I want to share my story because there is hope. There are new products that can truly make a difference, and there are people who really care about showing you how to use them.

I am forty-eight years old. In addition to lymphedema, I suffer from diabetes, hypothyroidism, morbid obesity, sleep apnea and hypertension. I have been dealing with these chronic diseases for nearly 10 years. 

I was active and independent until about four years ago when I had a bad fall in the bathroom and tore my left hamstring. A fall that resulted in a nearly month long hospitalization, during which I was unable to walk or use the restroom. When I was finally discharged, I endured further setbacks, the worst of which was reoccurring infections. My condition worsened and I watched my right, upper leg and groan increase in the size until it formed a large mass. It was heavy and painful, and made walking extremely difficult. 

I had an HMO policy at the time. My doctors knew nothing about lymphedema. No one could tell me why my right leg was so much larger than the left. They prescribed weight management and home health but it seemed like they really just wanted me to go away.

So I went looking on the internet, for a specialist or someone to help me. But I couldn’t find anyone. I did the best I could for the next few years. I had home health nurses take care of the basics but my mobility worsened and my health declined. I was unable to sit in a car, no less drive one, as the swelling and numbness in my thigh made it impossible to sit for any length of time. It got to the point where I could only be transported by ambulance.

Through it all, I somehow hung on to the faith that I could find help and turn things around. I had been very athletic most of my life so it was hard to except being confined to bed most of the day and not being able to manage a twenty foot walk without heavy breathing. Fortunately, I have many wonderful friends and relatives and they never gave up on me. My amazing journey to recovery began with a better insurance plan and a trip to UCLA in January 2015.

I spent four days At UCLA medical hospital under the care of numerous specialists who ordered many tests to determine my overall health. It was clear that my weight had to be controlled, so I was given low carb low, calorie diet, which I was faithful to. I also started physical therapy and that was equally key to my improvement. My physical therapists were terrific and taught me minimal, low impact exercises that I could practice in bed at home. Eventually, I started walking outdoors and lost seventy-five pounds in six months. My blood sugar improved and I was sleeping better. 

My weight was still a huge issue, one that kept me from treatment at the UCLA Outpatient Rehab Facility Lymphedema Program. But the lymphedema therapists asked for help from Sara Berger, a Compression Consultant at BioHorizon Medical. 

When I met Sara in February 2015, my life changed.

Sara explained that she typically consults on compression therapy product options in the outpatient rehab setting with both the patient and the therapist together. However, since I couldn’t be treated in the clinic due to my size, Sara made an exception and came to my home. There she told me about the Lympha Press Lymphapod which is a pneumatic lymphedema compression pump that includes a full body compression suit designed for home use. She also told me about the Reduction Kit, a new, garment innovation from Medi, the manufacture of CircAid. This is an amazing product that can be reduced in size and fit, as a patient lymphedema reduces in volume.

This is where my PPO insurance plan really paid off. With the help of the terrific insurance specialists at BioHorizon Medical, both the lymphedema compression pump and the Medi, full leg, Reduction Kit were approved.
The LymphaPod compression device proved wonderfully comfortable and it definitely helped to soften the mass in my right leg, but it was the Medi Reduction Kit that proved so instrumental in rapidly reducing it’s size and the severity of my lymphedema overall. 

Sara started with the right leg only. It was July 24th 2015 when she first showed Hashana, my nurse, how to apply the upper leg Reduction Kit. The process of fitting it to my very large right thigh required the help of a few Medi accessories, such as shelf straps and extenders, When complete, my leg was under comfortable, in-elastic compressed for the entire day, and in my case, the entire night. Hashana would return the next morning and remove the Reduction Kit, wash my leg, and reapply it, making reductions in the size of the garment on almost a daily basis. 

With daily use, my right thigh has reduced in size from one-hundred and sixty centimeters (63 inches) to eighty-eight centimeters (35 inches) over six weeks (42 days), a reduction of seventy-two centimeters (28 inches). A total reduction of over 44% from its original size. 

These are amazing results. I now have the ability to sit in a car and travel or sit in a restaurant or park bench. I can walk 2 blocks now and I am going to start aquatic therapy next week. Things are so much better for me now. I have more mobility and range of motion in my legs. My endurance has improved as well as my blood pressure. 

I am humbled and grateful for these incredible results but it wouldn’t have happen without the help and support I received from Sara and the BioHorizon team. I also want to give big thanks to my home health nurse Hashan, who comes to my home every morning at 4:30 am to apply my Reduction Kit; and to my friend Charlie who has driven me to my doctor appointments the past years; and to my physical therapist Zach has also had a big impact on me with his positive attitude and never wavering support. 

This journey has inspired me and given me great hope. There are many things I want to do. Now I can do them. Blessings to all who have helped and supported me.
Thank you so much.