Lymphedema: What MDs Don’t Know, What You Can Do

Over the last four years, with extreme swelling in my legs, I saw a number of medical practitioners and tried everything they recommended, all to no avail. Today for World Lymphedema Day, years into my issue but only a few months after diagnosis, I share my story. If for nothing else, I hope to bring awareness to the disease and hopefully spare others the same anguish and confusion.

Lymphedema: What MDs Don't Know, What You Can Do on Pura Vida. Sometimes.Perhaps the larger issue is that, during the course of my struggles, which began during pregnancy, I spoke with 15 medical practitioners (yes, I counted), including 10 medical doctors – my obstetrician, some primary care, some the doctors I worked with at that time.

I got great recommendations from the health professionals including ultrasounds for vascular flow (my veins were fine), extensive Preeclampsia testing, yoga poses, elevating my feet during the day, nutritional supplements, acupuncture (very bad for us “Lymphies,” as it turns out), compression garments, the list goes on, and I tried all of it. The funny thing is that none of the doctors even hinted at Lymphedema but the last. And all came to the conclusion that I’d just have to live with it. 


Lymphedema: What MDs Don't Know, What You Can Do on Pura Vida. Sometimes.Lymphedema symptoms & onset

The struggle during pregnancy was real. Check out the photos at right. Particularly problematic in my right foot, my swelling looked like beans in a stocking – lumpy, red, and cracked, and worse at the end of the work day. It was tight, and my skin stretched. If you pressed on my foot, and all the way up to my knee, you’d leave an impression for at least a minute. None of my closed-toe shoes fit, and I broke all of my sandals except one pair (at right), which I wore every day to work, around the house, to parties, and to my brother-in-law’s and sister’s weddings. People stared at my feet, strangers commented on them. And through it all, each day until the day before my daughter was born, I walked my puppy for at least an hour and did Zumba. Since then, some days it’s bad, some days it’s okay, but my feet and legs are markedly bigger than they were five years ago.

Diagnosis

Fast forward to this past November 18. I went to the doctor because I had pain in my right leg and wanted to make sure it wasn’t venous, like an embolism. The physician’s assistant told me it was probably a nerve under pressure from swelling, and told me to wear compression garments until the next time I saw her. On December 7 I went back, and the swelling that had persisted since pregnancy was much better, as was the nerve pain, but my foot was still puffy. Very matter-of-factly, she said, “Well, you have Lymphedema.” Um…Google?

She told me mid-foot swelling like mine was indicative of Primary Lymphedema (i.e. it’s genetic), it’s incurable, and I’d have to wear compression stockings for the rest of my life, and she referred me to a specialist. My grandpa suffered from it only when he was bed-ridden, and my therapist thinks others in my family may have it and not know it.

Lymphedema: What MDs Don't Know, What You Can Do on Pura Vida. Sometimes.What it means to have Lymphedema

There are two types of Lymphedema: Primary and Secondary. Secondary occurs in 20-40% of cancer patients and up to 150 million people worldwide, according to the World Health Organization. Primary Lymphedema like mine is genetic and occurs in as few as 1 in 6,000 people, estimated by the U.S. Department of Health and Human Services. It’s caused by too few or malformed lymph vessels in the limbs, that aren’t able to effectively circulate lymph fluid. According to The Lymphatic Education & Research Network, the lymphatic system “fulfills the function of ‘immune trafficking,’ the process whereby infection-fighting cells can be mobilized to the tissues that require assistance.” It distributes immune-boosting cells and carries away byproducts in the blood like protein and infection. Stagnant lymph can lead to skin and lymph node infections. Read this great post on The Lymphie Life for more about the disease.
Lymphedema: What MDs Don't Know, What You Can Do on Pura Vida. Sometimes.
Aside from the symptoms I described above, it’s exhausting and heavy; one of the most accurate descriptions I read is that it feels like walking through water all day. And it’s hard not to feel dumpy when you’re wrapped up like a mummy and your pants and shoes don’t fit.

Practically speaking, what does this mean? You have to be careful with vascular dilation (think hot showers, cardio at the gym, Zumba…sigh), no infection-causing pedicures, compression garments like tights made of potato-sacks in perpetuity, and other treatments, like multi-layer bandaging to get the swelling down to a manageable level, self-manual lymphatic massage, swimming and yoga, and if you’re lucky and have good insurance, a pump to move the fluid out to the lymph nodes.

The good news is that my insurance is great, I have an amazing therapist at the Lymphedema clinic at Virgina G. Piper Cancer Center at HonorHealth, and I’m very fortunate that this is a genetic condition and not a result of cancer. If you can catch it early enough and you’re diligent in controlling it, the lymphatic system can be active and play its immunological role.

Moving on

The day I began my compression therapy was hard. My therapist told me I needed to allow myself to mourn. Life would be different. And when I was ready, I had to move on. I sent my family a photo of my bandages and got yuck-face emojis rather than sympathy in return. Luckily, my self-worth isn’t based on others’ opinions, otherwise, this whole saga would be a total mess. There are ups and downs. I struggled with the idea that I’d never again dance all night. I would have to end my reign of liberated toes and sparkly nails. Then I found the phenomenal Veronica of Lymphie Strong, a blog about not giving in. Her post on The Tights Lady resonated deeply with me. There’s no reason I can’t stay fly and relatively active like others who are fighting the good fight. In fact, all the online chats and blogs are replete with comments from people just like me, with late diagnoses, fatigue, frustration, and determination to live fully.

Lymphedema: What MDs Don't Know, What You Can Do on Pura Vida. Sometimes.I’m very new to all of this and am still working it out, but I’m better off knowing what it is. I just now tried the pneumatic compression pump (at right)- it feels like your leg is being swallowed by a gigantic snake as the gentle pressure slowly crawls up the leg, and the time I need to use it gives me an excuse to sit still. I ordered some funky tights, and don’t give AF. I’m mobile, I do things, am otherwise super healthy, and life is good.

Many others are not so lucky. Lymphedema can result from very serious illness, many don’t catch it in time, and it’s expensive – wow, is it expensive. If you don’t have insurance, your options are limited and the condition is chronic.

For medical practitioners who don’t know enough about Lymphedema to recognize the symptoms, for those who don’t know they have Lymphedema, and for those who can’t afford health coverage, please sign the petition to designate Lymphedema as the 2018 World Health Day campaign for the World Health organization. It takes 20 seconds and around 2,400 signatures are still needed. Learn more about World Lymphedema Day. If you know someone who has been through this, or experiences some of the signs, please forward this post and help spread sympathy and awareness, because ultimately we each are masters of own our health.

Lymphedema: What MDs Don't Know, What You Can Do on Pura Vida. Sometimes.

 

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