Until recently, I have been very lucky with my lymphedema management. I’d have a flair of lymphedema, see the therapist for a while and then be able to go about my life without bandages or even a compression sleeve until the next flare-up a year or even two later. When I would notice the beginning of swelling, I’d wear my bandages for a week or so, be more conscientious about doing my home massage, and then I’d be OK. If that didn’t work, it was back to the therapist for more drainage sessions.
This fall, however, my measurements were worse than usual. I was moving from mild lymphedema to moderate. It became clear that I needed to step up my lympedema management. I spent weeks getting manual lymph drainage therapy and wearing bandages.
My therapist brought up the topic of a pump to use at home. I had some reservations. Pumps are expensive and time-consuming. Would I really follow-through on using it? However, I asked more questions, met with a representative from the company my therapist recommended, and decided to give it a try.
Lymphedema pumps have garments with chambers that fill with air and then deflate in a particular order that moves lymph fluid from one part of the body to another. My therapist thought that the FlexiTouch pump was the one that would be right for me because it was designed by lymphedema therapists and the compression is more gentle than some others she has tried.
A company representative came to my home to teach me how to use the pump. It seemed complicated at first. There are three pieces with a soft suede-like covering. One goes around my thigh and lower trunk, one over my chest and shoulder, and one on my arm. The fit is adjusted with Velcro tabs. Each of these pieces has a hose that attaches to the pump, which is about the size of a large shoe box.
The pump can be set to different programs that use specific patterns of compression for particular problems. My program lasts 66 minutes.
What are the challenges I have found?** Time.** Ideally I would pump in the morning and then put on my compression sleeve so that I would be at my smallest measurement all day long. But I leave for work at 7, and the program takes 66 minutes plus the time it takes to don the garments. I’m getting faster at that, but at best, it is an hour and a quarter commitment. Because the specialist recommended not using the pump right after a meal, finding a time that works has been a challenge. Right after work is OK, but then our supper is delayed. About an hour after supper seems to be my best time during the week. On the weekends, the morning time is working well.
Mobility. Part of the time factor involves my relative immobility during the process. I am right handed, and my entire arm and hand are encased in the sleeve while I am lying down. At first I tried to read, but the process of holding the book in my left hand and turning pages proved to be too cumbersome. Now I lie on the sofa with my right arm extended on cushions to elevate it. My gadgets are in my left hand: remote for the TV, cordless house phone, and my cell phone for checking email. When I drop one, I grumble and curse because it is so hard to move to recover it.
Cost. The way a person’s insurance policy covers pumps varies. On my policy there is a fairly large deductible and co-insurance before insurance kicks in to cover the rest of the cost. However, I have had quite a few diagnostic tests in this insurance period, and the cost of my lymphedema therapy was high too. So by the time I needed to pay for the pump, I had already spent my insurance maximum. Whether I would have shelled out the approximately thousand dollars my insurance would have wanted me to shoulder in a healthier year is a tricky question. Maybe not. However considering the advantages of the pump, it probably would be worth it.
Here are the advantages.** Home use.** I no longer have to spend time and gas to get to my appointments. I can do the drainage when it suits me. I can even talk on the phone because the pump is quiet. Ultimately this is a huge time saver, especially for people who live a long way from a lymphedema therapist.
Regular use. It was a challenge to schedule three appointments a week with the therapist. She recommends daily use of the pump, which I have not been able to manage, but the four or five times a week I have been using it is still more than we could schedule at the rehab clinic.
Ultimate cost savings. Seeing a therapist at a clinic is an expensive proposition. Of course, once I’ve met my deductible and co-insurance, the insurance covers the rest for me. But the process is still part of the burgeoning cost of health care. We all pay in higher premiums and/or taxes even when the payment is not coming out of our wallet directly. The pump is a big up-front cost, but my therapist expects that I will not need to see her again except for occasional check-ups.
Great results. My therapist took arm measurements when we finished the series of manual lymph drainage appointments. Then she measured me again after a month on the pump. Most of my measurements were down, often by two or three centimeters. This reduction is very typical she says. In fact, she has learned not to send people for measurement for compression sleeves until they have used the pump for a month because so many people had to be remeasured for sleeves after use.
At home pumps are not for everyone. For people with mild lymphedema, they may not be necessary. Women considering them need to ask themselves whether they will make the commitment to use them regularly.
But if you live far away from a therapist or if your lymphedema is getting worse despite your best efforts in home care, then a pump to use at home could be exactly what you need to be in control of your lymphedema management.
Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.