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A letter to the NIH from Kristin

A letter to the NIH from Kristin

Dear Dr. Collins, 

Thank you for taking the time to read my LE story.

In 1997, my dermatologist found a suspicious mole on the back of my left calf. The mole was surgically removed and the pathology report came back as “inconclusive” for

Subsequently, I was scheduled for surgery where additional surrounding tissue would be removed, as well as a few lymph nodes from my groin. Six pathologists examined the dissected tissue and lymph nodes: Three said that there might be traces of potential cancer (about a 2% risk), and three reported no traces of cancer whatsoever.

Because of this inconsistency in the pathology reports, it was recommended that I undergo another surgery to remove more lymph nodes in order to completely rule out any evidence of melanoma. After the second surgery, all six pathologists agreed that they could find no evidence of cancer in my lymph nodes.

Three months later, as a 27-year-old graduate student and while working as a part-time food server to support myself, I noticed after a long shift that my left foot and ankle were swollen. I quickly scheduled a follow-up appointment with my surgeon where after examining my leg, he said casually; “Oh, it looks like you’ve developed lymphedema. I will refer you to the lymphedema clinic.”

Easy peasy, I thought. I remember telling my boyfriend: “Yes, that’s exactly what I must have… I’ve had lymph nodes removed and now I have edema. Perfect - diagnosis equals lymph-edema.” I scheduled a consultation at the lymphedema clinic and was eager to get this lymph-edema situation taken care of so that I could move on with my life.

Prior to this, I was adventurous - I loved to travel, I was a runner, a hiker, and loved to dance the night away with my friends. I loved clothes - shoes especially. I loved getting all dressed up and feeling the freedom and joy of being a young and spontaneous woman. My whole life was ahead of me.

That freedom was soon to be a thing of the past.

It was after spending an entire day at the lymphedema clinic in San Francisco (having been massaged, pumped, wrapped, and elevated), that it finally dawned on me: This treatment does not actually cure this disease, it only manages it! Nobody, all day, had actually told me there was no cure. I had to stop one of the therapists and ask what felt like the most important question of all; “Wait a second, will I have to live with this and
wrap and pump and elevate and message every day for the rest of my life?”

“Yes,” was her answer.

As I sat back in the chair with my mummified limb painfully wrapped in gauze and layers of perfectly wound ace bandages, I watched the other patients make their way in and out of the treatment offices, their legs engorged, infected, and disfigured. It was at that moment that I finally got a glimpse into a future I never - ever - saw for myself.

I went home that night and for two hours before bedtime, painstakingly wrapped my leg, knowing that I would need to do this every single night for the rest of my life in order to not end up like the patients I met earlier that day. To keep this dreaded disease from catapulting me into a life of potential disability, disfigurement, and even death from infection (say from a bug bite or cat scratch that turned to cellulitis that could then lead to sepsis), I needed to be vigilant in my care.

And with my wrapped limb, I went to bed. And in the morning, I took the required hour to unwrap it and roll up the bandages again. This was my “new abnormal”. I was devastated and twenty-four years later, still am.

As the anger and fear mounted, I quickly printed up all the most salient facts I could find about LE (particularly the risk to patients who had their lymph nodes surgically removed) and marched into my surgeon’s office. I asked if I could leave them in the waiting room. They agreed as they walked me into the doctor's office. After my surgeon greeted me, I implored him; “Why didn’t you disclose to me that there was a risk of developing this God-awful disease from the surgery?!!”

“Oh, you are young and skinny,” he said. “Your risk was much too low to talk about lymphedema. Look on the bright side. At least you don’t have cancer.”

That’s right. He responded to my justified anguish by telling me I should be grateful.

In deciding to write this letter, I first asked a trusted ally; “Is my case too mild to share? Will my letter matter? I mean, my case is not nearly as bad as so many others.”

The images of the patients at the LE clinic are never far from mind for me, even today. To that, he shared a perspective and a TRUTH that I had never heard but that stopped me in my tracks in its affirming truth-telling. He replied; “There is no such thing as a mild case of LE.”

And so with his sage words in mind, and in the midst of enduring LE for more than half my life, I ask you… Would you consider any of the following examples “mild”?\

Here are only some examples of what it’s is like living with LE:
● Daily wrapping, elevating, and wearing an uncomfortable and sometimes painful compression garment from my toes to my thigh from the moment I get out of bed, until the moment I go to bed.
● No more international travel: long plane rides are dangerous: my dreams of returning to Prague, Greece, or visiting Iceland, New Zealand, or Japan have been relinquished.
● Limiting my options: friends inviting me to go dancing in the evening after we had taken a walk or been window shopping in the afternoon: my limb would be way too swollen. That would be a no. Always a no. Only one physical activity a day.
● Soon after diagnosis, choosing vanity over medical safety. I bought a pretty business skirt and kitten heels for a job interview. I really wanted to look nice and, against my better judgment, I took a deep breath and removed my compression
garment to make the outfit work. It was a long walk from my car to the interview and then many stairs and an elevator ride to the business office. The whole time, my thoughts were not on the interview, but on my leg. By the time I sat down to
be interviewed, my leg was painfully swollen. I was so distraught and distracted, it was hard to focus on the interview as I felt the fluid accumulate as my leg dangled from the chair. When it was over, I had to make my way back to my car. I
ran back in tears, wondering what had happened to my life, to my freedom. My leg was so engorged. I was 28 years old.
● Dating: having to explain to potential partners why I had a swollen limb, wore a hideous compression garment, and needed to elevate, wrap and pump my leg. Wondering if they would even find my body attractive.
● Missing out on activities other people take for granted: days at the beach, pool parties, long nights dancing, long days hiking, adventures that require health and spontaneity.
● Dreading summer: heat makes the swelling worse. Finding summer pants and shoes is so challenging.
● My wedding: looking at the beautiful shoes, knowing that I cannot wear any of them. Choosing something sensible and still needing to turn in early, when everyone else stayed up dancing, while I ended the evening wrapping and elevating my leg.
● My husband surprised me with a honeymoon to Hawaii. I spent most of it under the shade of a tree, with my leg elevated. Wearing a bathing suit while wearing a thigh-high compression garment makes me feel wildly self-conscious, not to
mention the fact that it is incredibly hot. Swimming in the ocean and then walking on the sand is pretty tricky with a thick orthopedic compression garment on.
● Soon after delivering my baby (don’t get me started on LE and pregnancy), he was colicky. He required around-the-clock soothing. The only thing that soothed him was being bounced - by me - requiring me to stand and well, bounce. Given
the law of gravity, if I’m standing, I need my compression garment on or I will pay the price in rapid swelling. I was too tired to wrap before bed and you cannot sleep in your garment. If when being awakened for mommy duty I was too exhausted to grab my rubber gloves in order to pull that darn garment over my swollen limb and then glue it into place, I would resort to standing on one leg. This meant balancing on one leg while the LE leg was elevated on the side of the bed or a rocking chair. I did this often and for months on end.
● Work travel: my career requires travel and giving presentations. How do I communicate the need to a client that I require a day’s rest after air travel so that I can stand the next day? Will they offer me a tall stool (my worst nightmare with
the thought of my leg dangling all day). Where will I elevate my leg? Will people notice and stare? Will I again have to field their questions about my unusual condition?
● Meeting for a client dinner after a day on my leg is a no-go for me. I will again have to explain LE to someone I wish I did not have to include in this personal matter. Or lie that I have a headache - people hear that a lot.
● The need to constantly elevate my leg: I cannot tell you how many times I’ve received looks of disapproval when I put my leg on a chair or couch in a public setting.
● Again, air travel: finding some way, any way, to accommodate the need to stretch, move, and elevate my leg when traveling and then require extra self-care to decrease the swelling the evening I arrive. Missing out on the evening activities.
● Standing in line. I can actually feel the lymph fluid pool at the end of the day: I can feel the heat and pain and pressure, the itchiness. Out of necessity, I am often the weird lady who simply sits down in a grocery store line. (It’s apparently
even less socially acceptable to elevate one’s leg on the candy rack.)
● I need to be in bed between 7 and 8pm nightly so that I can wrap and elevate my leg, often hearing my family downstairs laughing and missing out on precious moments in my son’s life because I spend so much time in bed to care for my
● Driving or being a passenger in a car on long car trips: how to elevate my leg?
● Yoga: too many poses require bending the knee or hip in such a way that my compression garment digs into my remaining lymph nodes, cutting off circulation
● Working out: if I do it first thing in the morning, I have to be off it most of the day. I often cannot work out after work because my leg is too swollen.
● Vanity: I love fashion - I have rarely worn a skirt that hits above the ankle or shorts in twenty-four years. When I have, I often need to field unwelcome questions from strangers. “What happened to your leg?” I wear sensible shoes - I
adore heels. I live with envy for the freedom other women have to dress as they please. My compression garment cuts me off right beneath my rear end, making something like visible panty lines laughably insignificant compared to the blurbing
thigh tissue visible at the top of my leg and beneath my bum. When wearing jeans, it just looks gross. If I do not have a long shirt or sweater to cover my upper thighs, I often exit a room by walking backwards!
● Giving up running. I loved to run. My LE does not.
● Gravity and heat: they are both my enemy. Constantly.
● Never getting a break: there is never a day when the care can let up. There is never a day that I can go without my garment or without elevating or without thinking about and dealing with LE.
● Daily discomfort and distraction. It is very unpleasant to wear a super tight, hot compression garment: I glue it to the top of my thigh. Sometimes that glue becomes “unstuck” and my compression garment rolls down my leg, becoming
more of a tourniquet. This is the worst in the middle of a workday when there is no glue in sight.
● Doctor’s visits: knowing - because experience has proved this - that I know way more about LE than any doctor I have ever visited. EVER.
● Fielding doctor’s minimizing comments: “Well, at least you don’t have cancer.” “Yes, and at least you do not have flesh-eating bacteria,” I wish I could say in return because truly, how is that statement supposed to help me deal with the LE
that I do have?
● Fighting insurance companies and providers to get my compression garments: continually getting push-back or them ordering the wrong size, compression, etc. and then starting all over again (this often takes months). Being told I am rude
when I demand proper attention. Often just paying out of pocket - even at times when I truly could not afford to.
● Being asked if I am ever in “denial” because of this lifelong disease and answering; “No, I am not in denial, I am in despair.”
● Often ending my days in tears; feeling like no one understands this, there is no cure and feeling disregarded and dismissed by the entire medical community.
● Feeling ugly and disfigured, scared, and isolated.
● Feeling maimed and disregarded.
● Feeling invisible and patronized by the medical community.
● Having to explain LE over and over again as few people have ever heard of it even though it is not even close to being uncommon.
● Having recently retired to bed for the evening but not having yet bandaged. Suddenly, the smoke alarm went off (low battery - no fire). Quickly grabbing my phone, the dog and racing outside. I did not have a compression garment on. What if there was an actual fire and I did not have a compression garment? That was what concerned me. That was my biggest worry as I sat at the curb.
● Preferring, if I had the choice, to amputate my leg. Yes, it would be awful, but the daily pain and maintenance would finally stop. But, unfortunately, with LE, it could then just spread to my abdomen.
● Fearing cancer: not because of cancer but because of LE.
● Not actively wanting to die, but looking forward to the afterlife so that I can finally be unburdened of this horrific disease.

Thank you so much for allowing me to invite you into my world. LE does not define who I am, but it certainly has robbed me of the freedom that before LE, brought me such tremendous joy.

Kristin T.