If you have landed here, you have been given a card. Welcome! Now let’s educate you a little. Thank you for being here, it means a lot!
In a nutshell…
What is lymphedema?
Lymphedema is swelling caused by a backup of lymphatic fluid in tissue. The lymphatic system isn’t working properly or, in severe cases, isn’t working at all. The legs are the most commonly affected area, but it can affect your arms, torso, and even head. If a person is systemic, it means their entire system is blocked. There are between 500-600 lymph nodes in the human body.
What does your lymphatic system do?
Your lymphatic system cleans your blood and transports your white blood cells around your body. When it isn’t working, it can cause all manner of health problems.
What causes lymphedema?
The most common form of lymphedema is a side effect of cancer surgery or treatment. Keep reading, though, it isn’t the only way to get it.
It is not limited to breast cancer, but anyone who has had breast cancer surgery should ask their doctor for a sleeve to combat the onset of lymphedema in the arm(s) closest to their surgery site.
In my case, the creator of the card you hold in your hand, my lymphatic system shut down during my pregnancy. You can read more about my personal story here. I’ve had systemic, primary Lymphedema for 12 years.
How do you fix it?
You don’t. Once your lymphatic system is damaged, it doesn’t repair itself.
Are there treatments available?
Doctors are researching new treatments, like lymph node transplants (still being tested), but the most effective treatment right now is invasive, exhausting, and expensive. On the good side, it works (better for some than others), but it is a 24/7 for the rest-of-your-life kind of thing. The breakdown is:
- Lymphedema maintenance involves lifelong management. Maintenance cannot happen until it is under control through therapy.
- You cannot exercise without compression bandages or stockings. If you do, you will pool more fluid in your limbs.
- You cannot get into compression bandages or stockings unless you are in therapy. Using compression without the fluid being manipulated could force the fluid to your heart. Cardiac failure. B-bye.
- You cannot get into therapy unless you a) have access to someone who specializes in it, b) have insurance that will cover it, or c) have lots of money.
Complete Decongestive Therapy (CDT) has been called the “full court press” of lymphedema treatment for moderate to severe cases (stages 2 and 3). CDT involves manual lymph drainage and compression bandaging using short-stretch bandages in multiple layers.
Bandages are expensive and a pain to launder as they are long and cannot be put in the dryer. Think of wetting an unraveled ball of yarn and trying to pull it apart so that you can lay it flat to dry. Now think of trying to do it by yourself, the amount of space you would need so that it could air dry, and the fact that you can’t iron it flat. And, no, you can’t hang it out in the sun to dry.
Manual Lymph Drainage (MLD) is a kind of painful-in-a-good-way massage therapy where a massage or physical therapist* manually manipulates the fluid in your tissues to other parts of your lymphatic system that might be working better in the hopes that your body will naturally flush the offending fluid out through natural means.
There are “pumps”, sleeves that you put your legs or arms into that massage your limbs via a motorized unit, but they can be dangerous without MLD and are not recommended by most. They are also bulky, inconvenient, and stressful in their own way.
Is lymphatic therapy covered by insurance?
As far as insurance goes, I’ve found there is a general rule: If there is no pill for it, it isn’t covered.
Physical therapy* is covered by most insurances, though it can sometimes be a pain to get. This does not include Medicaid. In my experience, Medicaid may cover it (usually not), but Medicaid is not accepted.
Massage therapy is considered “alternative medicine” and is, in most states, not covered by insurance of any kind. In my opinion, this needs to change.
Bandages are expensive. Compression stockings are expensive. Patients need at least two sets in order to have one available while the other is laundered. Both lose elasticity, and require specialized cleaning and care, as the natural oils in human skin breaks down the elastic. Both need replaced every 3-6 months and have to be ordered, the latter requiring special fittings.
Can it get worse?
Most of us think “fat” when we hear the word cellulitis. Cellulitis, though, is actually a fast-moving bacterial infection that can turn deadly. Sepsis is an internal infection that goes around shutting down your internal organs…kidneys, liver, lungs, heart…and, if not caught immediately, you die.
Last year I came down with pneumonia in, literally, an hour. They called it “Rapid Onset Pneumonia”. My temperature shot up to 105 without warning and my then 11-year old had to call 911. They put me on an IV of fluids and refused me a blanket as they tried to get my temperature down. They took x-rays and theorized from 3:30pm Friday to well past 5am.
I had to explain more than once that I had systemic Lymphedema and what that was. I was in a hospital. In the ER. ??? I shouldn’t have to.
The doctor came in and told me that he couldn’t find anything wrong with me, my lungs looked clear, but that he was going to treat me for bronchitis. My right leg looked like it had been dipped in cherry KoolAid, it was carrying heat, and they discharged me. That was Saturday afternoon. Monday I went to an Urgent Care just south of us. My mother had found out that the primary doctor there worked with a local physical therapist who treated lymphedema. He immediately recognized it as Cellulitis, sat me down, and went over an aggressive treatment in order to avoid Sepsis. It took several types of antibiotics, including 5 days of shots, to get it under control.
Who the heck am I?
My name is Ana Maria Selvaggio, aka Renmeleon, and I am a homeschool mom working out of a home-based studio as a freelance illustrator, writer, and designer. Having had LE for 12 years, and getting stared at a lot, I decided to take matters into my own hands and try to help educate the public. It is, unfortunately, a sad fact that most medical personnel are ignorant to what LE is and those who suffer shouldn’t have to explain it to them every time they seek treatment.
How do you know all this?
I am not a medical professional. By occupational need, I am a researcher. It took me almost 5 years before I was diagnosed with LE, by my hairdresser, since then I have done extensive research in order to help others who feel they have no hope.
Ok, now what?
Now we keep getting the word out, passing on awareness, and spreading compassion through one less stare at a time. Thank you for taking the time to read this far. Just one more person that knows is the potential that hundreds more will know in future. We need all the help we can get.