Mary Kastelberg was diagnosed with lymphedema at age 12. This is her story, shared in partnership with LE&RN, a nonprofit network devoted to spreading awareness and building resources for lymphedema.
When I was 12 years old, two of my siblings noticed that my right thigh was bigger than my left. In fact, it was a full three inches bigger, which just didn’t seem right. So my parents started taking me to doctors’ offices.
I had CTs, MRIs, and other tests, and experienced the whole whirlwind that occurs when you go from never having had any medical issues to being diagnosed with lymphedema. It was challenging to figure everything out.
Lymphedema wasn’t the first thing that came to mind to doctors while searching for a diagnosis. I remember asking my mom why we were in the cancer unit and whether they could make a wig out of my own hair. My blonde hair felt like part of me and I didn’t want to lose it.
It’s definitely a journey to get diagnosed. Luckily my diagnosis journey was only about six months long, which is very short in comparison to most other people.
At that point, upon getting my diagnosis, I received a huge list of things I couldn’t do. Suddenly a kid that loved running around barefoot and playing sports and dancing … Well, it was like a switch flipped. Now I couldn’t do all that. I had to act like an adult.
When I started lymphedema therapy, they told us about a support group they had and my mom loved the idea. We walked into one of the meetings and I looked around and realized most people were obese and in wheelchairs. Everyone was probably 68 to 80 years old. It wasn’t very uplifting.
I asked my mom, “Is this my future? Is this going to be me?” It’s easy to start Googling and become overwhelmed with images that seem to dictate your future. Especially as a child, that’s a very difficult experience.
You Sink or You Swim
In a situation like this, you really have only two options: sink or swim. I chose to swim, and I could not have done it without my mom’s help. She was there for every single appointment, every surgery. I have had her by my side for my entire journey.
But it wasn’t easy. In the beginning, I never wore shorts. I didn’t want to wear my compression garment when I was wearing a dress, then I’d pay for that later. It got to a point where I was tired of giving up my freedom to lymphedema, and I chose to be compliant rather than in discomfort and pain.
Over time, managing my lymphedema became my passion in life. I realized that my ability to connect with people that I had always had, even since I was a kid, could be used in conjunction with spreading awareness about lymphedema. I ended up going back to that support group – this time as a guest speaker.
The Lifetime Journey of Lymphedema
You get to meet so many influential people on the lymphedema journey, as hard as it is. When I found out about my doctor in California, I discovered he was one of the most reputable surgeons in the United States. He’s become one of the most influential people in my life.
When I was 16, I discovered that my lymphatic system hadn’t developed correctly in my right leg. I had vessels that stopped at my foot and had no inguinal lymph nodes on the right side. I was doomed if I didn’t have certain surgeries.
The doctor explained that if we took a risk together, he could create a detour system to link the lymphatics with the circulatory system with lymphaticovenous anastomosis and lymph node transfers. In addition, I could have a suction assisted protein lipectomy, which is basically to remove all the gunk – sort of a fancy liposuction.
I learned a lot through my surgeries and it gave me ownership over lymphedema and my own recovery. I get questions all the time about my surgeries and it’s important to remember that every single person is different. Every surgery goes its own way. So for some people, having just one surgery could be great and could drastically improve their lives. Others, not so much.
I had very rare and severe anatomy, with fibrosis throughout my leg. My doctor told me that the inside of my leg was basically like mixed concrete. So what happened with my surgery isn’t necessarily the same as what might happen with someone else’s.
I would 100% say surgery is fantastic but you do still have to be compliant with your daily care. I use my compression every day, but everyone’s results are different. That’s because everyone starts from a different place and everyone has a different issue at the core of it.
Also, I would encourage anyone who is diagnosed with lymphedema to stay off of Google and instead, find your community on Instagram and Facebook. I didn’t know that such a huge community existed for a very long time.
Today, I get to be a part of this amazing community where everyone asks each other questions, prays for each other, and forms a community that prevents lymphedema from being isolating. And now I’m in a career that is all about lymphedema.
I’m inspired every single day by thinking about what things were like when I was first diagnosed compared to today, where I’m connected to a huge lymphedema community on Instagram. So if you have any questions, I am more than happy to help. Just send me a private message. I will welcome any questions and no questions are off-limits. (@livelovelymphie)
Be Your Own Advocate. Be Loud!
I learned from a young age that you have to be your own advocate. You have to fight for how you want to be treated. This is especially true when you’re interacting with doctors and even more so when you are a child in their eyes. I became pretty stubborn and pretty loud when I wanted to get stuff done.
Pay attention to what your body is trying to tell you and learn how to read your body’s signals. I noticed that when my areas of swelling would worsen, it was always stress-related. So if I had a big test coming up, or if something was going on in my personal life, I’d realize: Okay, it’s a pump day.
Don’t let the use of a pump or compression be overwhelming for you. If you only look at it from a scientific viewpoint, it can be very overwhelming. Think of it as self-care. Just zip up your garment and watch TV for an hour, twice a day, and view it as something that feels great.
And remember: This is not the end. This is not a life sentence. You get to choose what you do with what is given to you in your life. You don’t have to give up. You can fight!
I have a tattoo on my arm that says, “Fight, finish, faith.” It’s from one of my friends who passed away when we were 16. It reminds me that I am the author of my story just as you are the author of yours.
Use your lymphedema to educate others and make others better, because you were chosen to do so. We can help kids and everyone else who gets lymphedema in the future because we had the opportunity to have it right now.
So fight! Do not stop fighting because the second that you stop fighting, you’re letting it win, and that’s just not worth it. You have so much life to live and so much to give.