Living with lymphedema presents unique challenges. Here's one survivor's story.
Lymphedema is a painful, challenging condition brought about by a disruption in the lymphatic system’s normal ability to move lymphatic fluid through the body. It is often caused by injury, but can also appear after a surgical procedure.
The severity of lymphedema differs in each individual case. Some who suffer from lymphedema are helped with compression garments or pneumatic pumps and others require lymph node transfer surgery for relief. In each case, lymphedema is a lifelong condition which may or may not improve over time.
I never dreamed I’d develop lymphedema after breast cancer surgery. It was, in essence, an insult to my injury. It didn’t appear until about a month after I’d had both breasts removed. When I began to notice a swelling and tightness in my upper arms, I knew something wasn’t right. At first, I assumed it was due to the removal of several lymph nodes in each arm, and I thought it would get better as I healed. I was wrong. It was not going to get better and in fact, it was going to get much worse.
Lymphedema has greatly impacted my life. I’ve lived with it for the past three years. It hasn’t been easy, but I’ve finally figured out how to manage it. Hopefully, this article will help someone face their own lymphedema challenges.
In the mornings, the swelling in my upper arms is usually minimal. This is due to the fact that I sleep with both arms elevated on pillows every night. I’m not normally a back sleeper, so this took some getting used to. My husband has finally accepted sleeping on the edge of the bed because of the pillows, but hey, you do what you have to do.
After waking, I get my shower. In the shower, I make sure to massage my arms. I use a loofah sponge or a nubby hand mitt coated with body wash. The body wash helps move the sponge or mitt up and down my arms. I do this repeatedly to help stimulate the flow of the lymphatic fluid. When I have time, I’ll often dry brush my arms before entering the shower. I do this with a soft, natural bristle brush. Dry brushing followed by shower massage helps get me off to a good start.
Following my shower, I don prescription compression sleeves. I’ll wear these throughout the day underneath my clothing. The compression sleeves are tight and take time to put on. Mine are 20-30 mmHg strength. Generally speaking, compression sleeves come in three medical compressions: 15-20 mmHg, 20-30 mmHg and 30-40 mmHg. Compression is expressed in mmHg (millimeters of Mercury) just the same as barometric pressure. There are many professional medical companies that provide prescription strength compression sleeves. Juzo, Lymphedivas and Jobst are just a few of the better-known companies.
Throughout the day, I’ll go about my normal activities. The sleeves are made of nylon and spandex material. Although breathable, in the Summer months they are extremely hot. The compression sleeves help keep the swelling in my arms down so I can go about my daily activities. Although I am wearing the sleeves, I can’t do everything I used to do. I have limitations and must follow the advice of my doctor. Lifting heavy objects is one of the restrictions I now face because of lymphedema. I also have to remember when gardening or cooking, I must be careful not to injure my hands or arms. Any small cut, scrape, insect bite, or burn can turn from a minor injury into a major problem for someone who suffers from lymphedema.
In the evening, usually after dinner, I remove my sleeves. It feels so good to take them off and let my arms breathe a little. As soon as I remove the sleeves, my arms begin to fill with fluid. It isn’t instantaneous, but I can definitely feel the fluid buildup occur. This is the time of day I pull out my pneumatic compression pump. It was prescribed by my doctor. It’s a very complicated and expensive machine. I can’t hook myself up to the machine, so my husband helps. It takes a few minutes to get both arms in the sleeves for the machine. Each sleeve has many chambers that will inflate and deflate as the pneumatic pump works. My doctor has advised me to undergo a one-hour treatment period each day allowing the pump to help distribute and move the lymphatic fluid from my arms throughout the rest of my body. I feel like a prisoner as I go through this treatment. I must remain immobile and it’s frustrating. Some days I choose not to use the pump because it is so time consuming and uncomfortable, but I know it’s not good for my body to do so.
After I’ve endured the hour of torture (it’s not really, but I feel that way sometimes), I continue with any activities. My arms feel good after the compression pump has massaged my arms, but within an hour, the fluid buildup begins again. I know, as soon as I go to bed and prop my arms up on the pillows, the swelling with gradually decrease but I get tired of this never-ending cycle.
It’s hard to explain exactly how the lymphedema has impacted my life. Not only does the uncomfortable swelling cause me pain and discomfort, it also affects my physical appearance. My arms, from the elbow to shoulder on each arm, are much larger than normal. In order to dress, I have to choose garments several sizes larger than I’d normally wear or I have to find garments with large, open sleeves. I am very self-conscious about the way I look, but there’s nothing I can do about it.
My lymphedema isn’t as severe as some cases. Although I’ve had to have manual lymphatic drainage from a certified lymphatic masseuse for months, it could have been worse. I’m thankful I have compression sleeves and the pneumatic pump to help with the swelling. I’m also glad I was taught to perform manual lymphatic drainage on myself and I can also stimulate the flow of the lymphatic fluid through dry brushing and shower massage.
Lymphedema is a challenge and it’s often misunderstood. Those of us who suffer from it hope you’ll understand it is a very real and dangerous medical condition. If the lymphatic fluid remains blocked and is not relieved, there is an increased risk of infection under the skin. This infection is called cellulitis. Severe infections, ulcers and even amputation can occur in extreme cases.
Lymphedema cannot be cured, but it can usually be controlled so complications do not occur later. No one knows when or if lymphedema will occur after breast cancer surgery but it is a very real possibility. Doctors usually watch for signs and symptoms of swelling but if you notice anything unusual, report it to your medical team right away.