Lymphedema: The Patient Perspective by Sara Gercke, RPh, PharmD
An Interview with Eleanor Day
Eleanor Day is a nurse who discovered a malignant melanoma on her inner left thigh in January 1995. This discovery was devastating because her first cousin had died of melanoma at the age of 42, having opted to forgo aggressive surgery. This family history and fear of micro metastasis made Eleanor determined to seek treatment that would offer her the best outcome. She consulted with a plastic surgeon at Yale University, and they discussed lymphadenectomy, an option she decided to pursue because it might improve her chances of survival. The lymph node dissection resulted in lymphedema. Although Eleanor has lymphedema of the leg, the debilitation it causes and its treatment are basically the same as those for lymphedema related to any other cancer in which many lymph nodes are removed, especially breast cancer.
Q--When did you first notice the lymphedema? A--After surgery, I woke up with lymphedema. It had developed immediately. I knew something was wrong because I know the difference between postoperative pain and the discomfort I felt. I mentioned it to the doctors, and there was no real comment. Nobody actually said the word lymphedema at this point.
Q--This discomfort was more than postoperative swelling or complications? A--I had never had surgery this extensive, but it was clear that when I got home and could not get my foot into a shoe that there was a major problem. The doctors suggested I just wait to make sure it wasn't simply postoperative swelling, but I knew already it wasn't.
Q--When did the doctor finally make a diagnosis of lymphedema? A--I don't know that he ever actually said the word lymphedema. He called it slight to moderate swelling, and that was it. He did suggest wearing compression stockings and swimming. At this point, I felt I had to take things into my own hands. I was devastated to find that I couldn't get my foot into my shoe and that my leg was so swollen that I would never wear a dress. This is when I became my own advocate. As a result of my medical background, I began searching for treatment. I consulted a physical therapist in my town, and I started physical therapy, including some aquatic exercises, to improve my walking. This helped my problems with walking, but the physical therapist had no understanding or knowledge of lymphedema treatment.
Q--How much larger was the affected leg than the other one? A--The knee and ankle were the largest. Now that I'm better, it's hard to give a true opinion. I would say an inch or two larger from my toe to my groin.
Q--Did you go up a shoe size? A--I actually never did buy different-sized shoes to accommodate each foot. I was determined not to do that; I was going to solve this problem. I wore some non structured, loose canvas shoes.
Q--What came after physical therapy? A--At this point I was on a quest. I was not willing to accept the old adage You just have to live with it. First I contacted the American Cancer Society. After going through organizations at the national level, I sought help in my own area. At Yale, where my surgery had been performed, I joined a women's cancer support group facilitated by a social worker and an oncology nurse, Tish Knobf. They helped me with my search to make sure I was involved with the right groups and introduced me to other patients and found out about the National Lymphedema Network [NLN]. It has been my salvation. These people are very supportive. They have an 800 number and will answer all of your questions. The NLN had their annual conference in San Francisco in September 1996, which I attended. That was probably the turning point for me. I felt like a sponge-I was trying to absorb as much information as possible.
Q--Could you have gone to this meeting if you were not a nurse? Was it open to the public? A--It is open to anyone-patients and health care professionals alike. Four days are designed for health care professionals, and 2 days are structured for the patients. I brought back mounds of information, and I'd pass them along to anyone who would listen, health care professionals or patients. They were really the ones who gave me some of the guidelines on what worked and didn't work. Approximately 100 patients were at this meeting. I really learned about manual lymphatic drainage [MLD] there, through the presentations and from the experience of the patients.
Q--How did your health care professionals respond when you returned home and showed them all of this information? A--Initially they were reluctant to support me because they did not know about these treatments. Although hesitant, they did trust me enough to provide the necessary prescriptions I needed for the MLD. Once they realized that I was not doing anything harmful and had tremendous results-my leg was reduced in both volume and circumference-they were pleased with the whole process. Now I actually receive calls from them to talk to other patients who need help. So there is a happy ending. These health care professionals were not interested in the drug therapy presented at the conference, nor was I since I was having such good results with MLD. So I pursued something else I learned about at the conference-comprehensive decongestive physical therapy. It involves a group of entities, including MLD, good skin care, diet, compression wrapping at night, and compression garments in the daytime. I found someone qualified to perform this type of therapy through the NLN, which recommended people in particular areas. Three years ago, very few people performed this comprehensive therapy in the Northeast; traveling to New York and spending lots of time and money were normal. But a group in my state, Connell Physical Therapy in Windsor, Connecticut, made my experience incredibly positive. I could still take advantage of treatment without going to New York, staying in a hotel, and receiving treatments twice a day. That sounded like such an overwhelming thing to do, although I probably did it on a lesser level because I stayed at home and drove to my appointment daily. I did what they told me to do at home, and I think if you're committed, this can provide the same results. I scheduled my therapy for the fall, when the weather was good and my stress level was low. A commitment like this had to be planned into my schedule. I went there 5 days a week for approximately a month. So it was about 20 treatments with a one-way commute of 45 minutes to 1 hour.
Q--You really made a tremendous commitment for this month? A--I did, but I was ready for it. And I didn't want to get involved with something if it was the wrong thing to do. I had only been told to get compression garments or maybe use a pump. The pump sounded very negative to me. I didn't want to be a slave to that for the rest of my life. I wanted to get as healthy as I could and get on with my life.
Q--Who makes up the Connell group, and have they been trained to work with lymphedema patients? A--They are a small group of physical therapists who are caring, concerned, and committed. They are required to be recertified every two years, which made me feel comfortable about the group. They use the Vodder method of treatment after a few weeks of extensive training. The goal is to reduce the swelling of the limb, and once a plateau is reached, to be fitted for a compression garment. When I went to the Connell group, they were not fitting for garments, but they do now.
Q--Can you compare the Connell group program with that in New York? A--Treatment in New York is very programmed with most of the treatment components taking place at the center. There is a lot of activity. Connell was different. It's a small group. Privacy is maintained. At the end of every week they present you with a computer printout showing bar graphs of your lymphedema reduction. I felt like a 2 year-old waiting for my report card. I mean, anything less than reduction was just not acceptable!
Q--Were you covered by insurance? A--My insurance company would not cover the Connell group. This was a travesty, because I knew through NLN that Connell provided the right treatment. Tish Knobf helped me research this. Between the two of us, we called numerous therapy groups throughout Connecticut and the surrounding states, and some of them would do different aspects of the program that I mentioned. Maybe they were involved with skin care, or they might do a little manual drainage, but many of them did not recommend compression garments. I knew that you could not move all this fluid up and expect that gravity wasn't going to pull it back down. I understood that I needed all aspects of decongestive physical therapy to make it work. I tried to explain this to my insurance company, but they would not approve therapy through Connell. They did approve another physical therapy group in Connecticut that offered a much less comprehensive program- no structured attendance, no wrapping, no compression garments, and therapists offering minimal training. I'm talking about a few hours of training over a weekend. I tried repeatedly to explain to my insurance company that this was an ineffective route, and that money spent on this program would be wasted. I asked them to reimburse me that amount of money so I could put it toward the Connell program; however, they refused.
Q--Were you in an HMO? A--Yes, but my experience wasn't all negative. I did go to Connell, and I paid out of pocket, but they're very understanding, and they work with you regarding payment. They want you to get better, and they'll make it as easy as possible to help. And, in my opinion, paying out-of-pocket money makes you more committed. With insurance coverage, you might not really be concerned about the cost. I made a point of being there on time. I never considered not doing what I was told to do, and even today, I am religious, I am diligent, and I am structured about all aspects of my therapy, because of the time, effort and financial investment required.
Q--What type of wrappings do you wear during the day? A--I wear compression stockings. I could open up a store for compression stockings, because I have a house full of them. You get measured for a certain size and it appears to be right. Then you get it, try it on, and you wear it, and they hurt, pull down, pinch, or there is some other problem. And these are very expensive experiments. Consequently, I arranged for the Juzo representative for the Northeast to meet with my fitter, and we gathered a group of other lymphedema patients to voice our problems and concerns. He listened. The representative explained what was available in the lymphedema line. And becoming more educated about this was a form of advocacy. It still doesn't mean that I have found the ideal stocking. My problem is in one leg. However, I don't like wearing a stocking on one leg only because I feel like I'm pampering that leg and that my gait is affected. It makes me feel unbalanced. So I wear stockings on both legs, although I haven't been successful in finding comfortable pantyhose that accommodate my needs. I constantly experiment-with the pantyhose, you have to get three body parts that all fit well: the affected leg, the unaffected leg, and the torso of the body. So I have devised my own little architectural compression gizmo. I buy stockings, then I buy a panty girdle that actually fits well, and I have the stockings sewn into the panty girdle. I make my own pantyhose, if you will. My goal is to find pantyhose that are comfortable as well as effective.
Q--Can you describe problems you have had with compression stockings? A--Most of the fitters, with the exception of the Connell group, are not familiar with garment lines specifically for lymphedema. Historically, fitters have measured patients for compression garments that accommodate conditions such as vascular insufficiency or embolism. Essentially, the garments are the same, with a few differences. In a regular compression stocking, for example, the very top of the stocking has a transition area approximately 4 inches, the porosa, that isn't as tight as the rest of the stocking. When I wore it, the fluid would get to the porosa and bulge out at the top of my thigh. I thought this was wonderful, but when I went back to the Connell group, they told me to reorder stockings that were full knit for lymphedema. Also, if I were going to get individual stockings, the group instructed me to get them with a 1 inch porosa.
Q--Have you tried any other methods to manage the lymphedema? A--Compression wrapping grows old very quickly. It is such a commitment- washing the garments, drying them all over the house, hanging bandages and rolling them everywhere-it makes for a lot of negativity. For my care, daytime and nighttime wrapping was the same except that at night, wrapping was looser. When I was at the NLN conference, I saw something called the ReidSleeve. It's a rather bulky piece of equipment that is strapped on from toe to groin. It's dark black nylon and filled with foam, and has Velcro straps. It eliminates nightly compression wrapping. I explained to the Connell group that I wanted to try the sleeve, because the compression wrapping was beginning to hurt during the night. It was okay for a couple of hours, but then my foot would start throbbing, and there's no easy way to remove the wrapping. You start from to top of your groin or the top of your arm, undo the whole thing, and start over. This is not something you want to do at 3 a.m., when you only have a few hours left to sleep or when you're not getting a good night's sleep. Connell measured me, and I ordered the ReidSleeve. Interestingly, my insurance paid for the sleeve but not the therapy. This piece of equipment has greatly improved my quality of life. I can get it on in a matter of minutes at night, and I'm ready for bed without other apparatus. I got the sleeve about a year ago. I wore it for a month, and I went back up to Connell to be remeasured because I wanted to be sure that I was losing fluid, I wasn't gaining fluid back in my leg, that it was actually doing what it was supposed to be doing. And it was. I was absolutely thrilled. My goal now is to get the new ReidSleeve, which includes a walking device on the bottom. The walking device will provide me with more mobility without damaging the integrity of the ReidSleeve. This will make life even easier.
Q--How hard is the compression wrapping to put on compared with the ReidSleeve? A--The compression wrapping is very difficult for the elderly or if you have to use one hand because of arm lymphedema. The ReidSleeve has changed my life. Mine needs to be refurbished and my Velcro straps replaced, but I am hesitant to do it. I hate to let it out of my sight for a single minute for fear something will happen to it.
Q--Does your insurance company pay for those compression stockings that you wear during the day, and how long do they last? A--They pay for two stockings-obviously, for the affected leg only-every 6 months. All of the stocking companies will tell you that they last 6 months, but I don't wait that long. Sometimes you can feel that they've stretched out, so I usually replace them after 4 months.
Q--What kinds of barriers did you experience because of your condition? A--My barriers have been minimal. Physicians and health care people listen to me. They're cautious about what I'm doing, but because I've reported such impressive results, I think I've won them over. I think insurance is a barrier, but it's getting better. With all these groups and individuals fighting for legislation, I see all of this improving. Quite frankly, my only real barrier is the frustration that I feel sometimes when multitudes of people call, and they want to take care of their lymphedema, but basically they're unwilling to comply with the program. They may say, Gee, that's good for you, but I could never do that, or I'm not going to do that. They don't realize how much better they could actually be if they were willing to go along with it. I would never go backward. I want to be as strong as I can be. I do, however, have a lot of advantages. First, I have never had an infection in my leg. I feel like I've really won this war against lymphedema and that my problem is under control. It's not cured, but I'm light years from where I was before. Second, I'm not fighting active cancer at this time, so I can devote myself totally to combating lymphedema. Third, I never had radiation therapy, which I think has a major impact on many people-they might not respond as well as I did. Finally, because my lymphedema causes me pain, it's almost easy for me to comply with the entire program because I get such tremendous relief.
Q--How long will you have to wear these garments? A--Forever. They're hot. They're uncomfortable. In the summer, I try to find air-conditioning. I never wear dresses anymore, although no one has ever said anything to make me feel uncomfortable. Maybe the day will come when I will get past all of this, but at this point in life, I don't pursue it.
Q--Are the compression stockings that you wear during the day natural looking? A--They are flesh colored and a little bit heavier than regular hose. They are available with the toes covered or exposed. I prefer the open toe because it helps to prevent problems with athlete's foot and fungal infections between the toes. I wear knee-high stockings over the compression stockings so that they cover my toes and the garment, and help to protect the compression stockings and give them some longevity.
Q--How do you get these stockings on? A--With rubber gloves, which help to work the stockings up your leg. It does take time, and the first time you put your finger through the stocking is just an absolute nightmare.
Q--Do you exercise? A--I'm hoping to establish an exercise program that I can maintain on an ongoing, long-term basis. In addition to the lymphedematous limb, the stockings pinch and pull, and gather behind the knee and hurt over the bony prominences of the foot so you have to find exercise that works for you. I think it differs for every patient. Sometimes my will and my spirit are stronger than my physical capabilities. I might do too much exercise, then pull or hurt something and be forced to take it easy, and then have to start all over again. I'm learning to approach exercise more patiently and maintain it for a lifetime.
Q--Throughout this interview, you've indicated that you persevered. You could have stopped at many different points-when the doctor tried to convince you to settle for some compression, or the insurance company refusing to pay. Why didn't you give up? A--Surrendering was not an option. Three years ago, I didn't know anyone with lymphedema. As time went on, I met patients. I met them at the conference in San Francisco. Today, most of my friends and people I draw support from are either patients with lymphedema or cancer survivors. I found it very important to meet people with lymphedema, but most importantly, those with my level of interest and commitment. It was hard to do, but finding someone with your level of commitment makes the process much, much easier.
Q--What advice do you have for others who share your experience? A--You have to be at a point in your life where you can pursue this and make a commitment. Perseverance is important, and I would encourage you to research and exhaust all of your resources. My goal was to be as good as I could be, to reduce the lymphedema as much as I could.
Q--You've given us wonderful information. Is there anything else you want to add? A--Support groups are popping up everywhere. I think that they'll be a tremendous help to people, whether the problem is lymphedema in the arm or the leg. I hear plans for the future at the conferences I attend. I do think that there should be more preoperative preparation for patients, including measuring the limb pre and postoperatively so that a change in volume or circumference is apparent. There is also discussion about patients wearing lymphedema alert bracelets or wristbands during hospitalization so that health care personnel would be certain not to measure blood pressure or inject anything into the affected limb. Familiarizing patients with the NLN list of precautions for arm and leg lymphedema has also been discussed. I'm not sure how surgeons would view this practice, but I think it would help patients in the long run. Knowledge is empowerment, and we must educate ourselves and others. Sometimes, we even have to take matters into our own hands. Overall, the future is definitely looking brighter for lymphedema patients.
Eleanor Day is a Registered Nurse living in Wallingford, Connecticut. Sara Gercke, RPh, PharmD, conducted this interview as part of an advanced practice practicum at Meniscus Educational Institute in Bala Cynwyd, Pa, for The Philadelphia College of Pharmacy.