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Trying To Find a Doctor

I think it might be easier to find a needle in a haystack than a local doctor who knows anything about LE!

When I got married, my husband and I moved to a small town in Illinois that was about 3 hours from the vascular surgeon who had been my doctor for LE since I was diagnosed at age 14. He wasn’t great, I often didn’t like him, but he knew more about Lymphedema than any other doctor I had encountered so far.

I decided I would try to find a doctor closer to my new home. Thus I was getting on the internet and finding vascular surgeon groups that were closer to me. (Huge change in what you could do on the internet ten years into having LE) This started about a 3-month process of feeling isolated, lonely, and stuck.

I would call an office, ask if they had a doctor who treated lymphedema. I would be told, I am not sure, let me get your phone number and we will get back to you. About 90% of the time I had not heard back from that group within the week. One office called me back and asked me how do you spell lymphedema, they weren’t sure if they had a doctor but they might. Nope, that is not the office for me, cross them off my long list of potentials.

The phone call I got back (that still rankles me to this day) was a positive for the lymphedema community, but a huge negative for all of us primary patients. “Dr. xxx would be willing to see you IF you will forward us your oncology records.” Okay, so this doctor at least understands that lymphedema can be caused by cancer surgeries and treatments and knows what lymphedema is. I responded that I didn’t have any oncology records, I have never had cancer, my lymphedema is primary.

This woman’s response, “If you can’t be honest about the fact that you have had cancer, there is nothing that we can do for you!” in an extremely snotty voice. I replied that if your doctor doesn’t realize there is such a thing as primary lymphedema then your doctor is not the right doctor for me. Slam the phone down, cue the tears.

After that phone call, I gave up. (I would successfully find a new doctor in another 10 years). I was feeling more responsible for myself and managing my lymphedema than ever before.

I decided I would keep seeing the vascular surgeon in Des Moines once a year so I could get my compression garments, I had to have a script to get them ordered for the amount of compression I need.

Every year the surgeon would act put out, he would ask me, “Why are you here to see me?” I would remind him that he refused to send a new script, for my compression, to the fitter without seeing me. He would look at my leg for 2 minutes, write the script and walk out.

I hadn’t had a serious infection in almost ten years, just a couple that as soon as they started, I had called and he called me in an antibiotic. I wasn’t having any serious complications. This arrangement would have to keep working.

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Wedding Dresses, Compression, and Fake Fingernails, Oh My!

I found a wonderful man, while I was in college. He didn’t care that I had a lifelong disease, and he was crazy enough to want to marry me. We both wanted to be married, have kids, enjoyed active lifestyles etc. He had watched me put on my 50-60 specially ordered knee high and thought nothing of it.

Now, at this time 10 years into having lymphedema, there were some things I was nervous about. I had been told around age 16 that if and when I decided to have children I would probably spend 3-6 months in bedrest because of extra swelling during pregnancy. I decided I would worry about that one when I crossed that bridge. I also knew my ankle in my LE leg did not like high heels. No biggie, I would wear high heels for the wedding itself and buy some chunky, white, platform tennis shoes for the reception.

The week of the wedding, I had my updo practiced, final fitting for the wedding dress. I got fake nails the day before the wedding. I could easily get my compression off that night, no problem. The next morning as I am waking up, I reach for my knee high and find that I can’t get my compression on by myself with fake fingernails that are longer than my nails have ever been! My mom helped me get it on that morning. The wedding went on, it was beautiful, awesome, and amazing. My tennis shoes were a good decision, and the reception is still best party I have ever thrown.

Fast forward to the next morning when my husband finds out his wife has a super-power. I had gotten pretty good over ten years at getting this really strong compression knee high on. (Early on, I had learned that my LE was stubborn and required way more compression than many thought was good or necessary) It normally took me a minute maybe a minute and a half to get my knee high on and I thought nothing of it. It took us, with me trying to tell my husband how to get it on me, about 15 minutes that morning to get my knee high on. I was so used to fighting this thing on every day, he had never realized how much compression I was really wearing.

I could have been depressed by this situation, instead, I felt empowered. I could do this thing, that combined took us 15 minutes, in a minute by myself most days. That is a true Super Hero POWER! We did this for several more days into our honeymoon, until I was sick of my husband trying to put the compression knee high on me, I got rid of my fake nails.

Perhaps the most amazing thing in this whole situation is that I had made my LE life look normal and easy. There are many things about having LE that are scary, and not fun, and take extra time every single day. But the longer you have this disease, it just becomes your new normal. I hadn’t even realized all of the little self-care things I was doing every day. I had embraced the suck, and it became my new normal.

Having lymphedema and living with it successfully is a lifestyle. Either you are compliant with wearing your compression garments, whatever they are, or not. Either you are getting the necessary exercise to help your body move that lymph, or not. (The necessary exercise will be different for each person depending on their personal situation, for some this may be chair exercises and maybe water walking, for others it will be more.) Either you are taking meticulous care of the skin on your affected area or not. To do all of these little things every day and make it look normal, that is my Super Hero Power. I just do these things, I don’t complain (there is no point), and I live. I have lived with LE longer than I have lived without it. The LE lifestyle is my normal.

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Middle of the Night Surgeries, Not Recommended

Through the rest of high school, after my first round with cellulitis, I was compliant with compression, saw the vascular surgeon once a year, continued swimming (no I did not tell my parents about the box jumps and running that could be part of dry land workouts), and more or less had a pretty normal high school experience. I always wore long formal dresses so my compression wouldn’t show. I continued to sing, and I was pretty good at it. I headed off to The University of Tulsa in Tulsa, Oklahoma on a partial vocal music scholarship after I graduated.

Now, I was burned out on swimming, but Tulsa had a Crew Team that was recruiting athletes of any kind who wanted to try rowing. Of course, I would go try this out. I loved it!!! I just didn’t tell my parents about all of the running involved with being on a crew team. I was 6 hours from home by car, an active collegiate athlete, on a vocal music scholarship. I was living the good life.

I had started experiencing some shin pain, shin splints, in both legs from all of the running, not surprising since I hadn’t run much. Learning to get boats out of the water and over our head to carry back to the boathouse, I took an oar to my lymphedema shin. To this day, I don’t know which of these two things caused what happened or if it was a combination of both plus having lymphedema.

One evening my leg started to really hurt, worse than cellulitis! I called the athletic trainer, they were getting ready to travel with the football team, I was told if I was really in that much pain to just go to the Emergency Room. I found a friend with a car, I was struggling to walk at this point, my foot didn’t want to lift up so I was tripping on my toes, and my friend took me to the ER.

I sat there, I mean it didn’t look like an emergency, for hours. Finally, I was taken back and seen. The doctor recognized right away that I had Acute Compartment Syndrome. He explained that the muscle was swelling inside the fascia (a tight membrane around the muscle on the outside front of your shin) and the swelling was pinching off nerve function and blood flow to the muscle. They needed to operate to open that compartment or I could have permanent damage.

I freaked out, number one rule for any lymphedema patient, don’t cut, poke, or scratch your lymphedema leg, much less have surgery on it in the middle of the night!!! I tried to argue, I made them call my vascular surgeon back in Des Moines. The vascular surgeon agreed that the risk of not having surgery was a much greater risk than the surgeon cutting into my leg. I am 6 hours from home, my parents are in Des Moines, Iowa, I only have a friend with me at the hospital, and I am headed into surgery on my lymphedema leg, in the middle of the night, at the age of 18.

Amazingly, the surgery went fine, the doctor took precautions and I had a couple of rounds of strong IV antibiotics before I was released from the hospital the next day. My leg was extra swollen from the surgery because of the lymphedema, but I had no permanent nerve damage to the muscle that pulls your toes up when you are walking. I did much of my rehabilitation in the pool doing water jogging. I don’t know (I never asked) if this was because the ATC researched lymphedema and knew being in the pool was great for lymphedema swelling, or if that was how they would have had me rehab my leg anyway. (I still didn’t realize how good being in deep water is for lymphedema)

I seemed, and still to this day seem, to not have any long-term complications to my lymphedema from this middle of the night madness when I was 18. At the time I wondered if it was the running that had caused this, because of my lymphedema. I would wonder this for a long time to come. I still don’t know if the combination of the deep bruise, running, and lymphedema set me up for Compartment Syndrome or if this would have happened anyways. What I do know is that I run now, I have run a half marathon, I run 5K’s, and I have not had a recurrence of the condition.

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I Meet My Mother’s, Cousin’s Wife With LE

Image from: By Medical doctors (Own work) [CC BY-SA 4.0 (https://creativecommons.org/licenses/by-sa/4.0)%5D, via Wikimedia Commons

How cliche right? Might be a better title if I could add second cousin twice removed. Ha Ha. What did it take to get a 16 year old compliant with wearing compression? It took meeting a 35-year-old woman who had Primary LE that started when she was 14 too.

Shortly after my only hospitalization from cellulitis, my mom arranged for me to meet her cousin’s wife. They lived out of state and would be back in Iowa and willing to meet us at my grandparent’s house with nobody else around. (As a kid I didn’t realize my mom was talking about LE to her mom and siblings) I wasn’t that keen on the idea, but I didn’t really have a choice. (Remember back in 1994 the internet wasn’t what it is today. You couldn’t google Lymphedema and see images like the one above.) I had no clue how bad Lymphedema could be.

So we traveled to where my grandparent’s lived and met this couple in my grandparent’s living room. I don’t remember her name anymore. But I will never forget her. She had on big flowy pants because she could no longer get her left leg in jeans. She showed me the pump that she used ( I wouldn’t get a pump for another 19 years), the foam wedge she slept with under her leg. She hiked up her pants and showed me her leg.

I was horrified! How is it possible for one leg to be normal and the other to be so large? How did you live life without sweatpants and jeans? At the same time, I wouldn’t want to show off one huge leg and one regular. She was very nice. She was also the only other person I had met who had Lymphedema. I was scared. Was I doomed to have the same fate? How could she move, I could tell it was hard for her.

After meeting this wonderfully kind woman, who was willing to share her experience with me, something in me changed. I realized that what I did with my leg now as a teenager could affect me for the rest of my life. I knew right then and there that I would do everything in my power to make sure my leg never looked like that.

I became compliant about wearing compression most of the time. I didn’t wear it to the pool or when I worked out (I did not know at the time that you should wear compression for all activity that is on land). I wore compression to my high school formals with long dresses that would hide the knee-high under my pantyhose. I was still at stage 1 with my lymphedema, so my swelling went down almost completely every night. If I wanted to go to church without compression on, I didn’t swell too bad (yet, now if I am up for even 5 minutes I feel my leg start to swell).

I am assuming now, as I reflect on this brief encounter, that this was meant to help me learn more about lymphedema, but also as an intervention to get me compliant with wearing the ugly knee high. I don’t know if my mom realizes to this day how profound of an impact that one meeting would make on the rest of my life.

I thank my lucky stars I was athletic, happened to be a swimmer, and that my mom arranged this encounter back when taking care of my LE was pretty easy. Without these things I don’t know what my leg would look like today.

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Complications a.k.a. Cellulitis

I can recall with lots of details where I was, when I found out the Twin Towers had been struck, on September 11th, 2001. I can recall my emotions upon seeing the Columbine School shooting. I can recall in minute detail, the year, the day, the time, the movie theater where I saw the movie “Mrs. Doubtfire”.

You are probably thinking okay, I can understand why you remember those two tragedies that were world changing with lots of emotions. Why on earth do you remember so many details about seeing the movie “Mrs. Doubtfire”? For anyone who has ever experienced Cellulitis, that one word should explain it all.

Up to this time, my Lymphedema really did just seem like a cosmetic issue. Occasionally I needed to wear the ugly beige, not really skin toned, knee-high. My ankle itself was a little different looking than my right ankle, but not noticeably. (Read my post on What I Did Right, and Didn’t Even Know)

We had a family tradition of going to see a movie on Thanksgiving night. So as a family my parents took us to see a brand new movie that looked really funny, “Mrs. Doubtfire”.  We went to see a 7:20 movie that night in 1993. I walked into the movie theater feeling absolutely fine. About the time Robin Williams was being hit on by the bus driver on his way home from his ex-wife’s house dressed up as an old lady, my left leg started to hurt. It hurt enough that I was uncomfortable. I was sitting next to my Mom and told her that my leg hurt. She didn’t think much of it, I didn’t either so we finished the movie.

By the time we were getting up to leave our seats, it hurt to stand on my leg. There was a burning sensation going from toes to my groin. I whined on the way out to the car about my leg hurting, my parents I’m sure figured I was just tired.

I got home and cried climbing the stairs up to my bedroom, my leg hurt so bad. My leg looked normal, I wasn’t running a fever. My parents at first didn’t take me very seriously. I’m crying, I’m trying to get to sleep, I keep telling my parents my leg hurts really bad. (I don’t blame my parents here, they were just as uninformed of this major issue with having lymphedema. I also may have been a little dramatic as a 15-year-old girl.) Our neighbor’s son, who was in medical school, was home for Thanksgiving, so my parents thinking this is nothing and wanting to placate me, called to see if he would come and look at my leg.

The med school student came over, looked at my leg. Nothing was red, nothing was hot to the touch, I wasn’t running a fever. I was an overtired, drama queen 15-year-old girl. I eventually got to sleep that night. I woke up, the next morning, my leg was a little red and a little sore, but the searing pain from the night before was gone. My friend wanted to go to the mall, so why not?

We got to the mall, my leg was killing me, I started to feel sick to my stomach and dizzy. My friend took me home. Now I am running a fever. My mom takes me to the doctor, who does a blood test and sends us directly to the hospital. I am admitted to the Pediatric Intensive Care Unit.

I don’t remember much from my time in the hospital, I slept a lot. But I do remember how bad those strong antibiotics burned going up my arms, those antibiotics burning holes in my veins, causing the nurses to change my IV’s location frequently. I spent 7 days in the hospital. (Probably the reason I almost pass out anytime I need an IV now.)

I was on and off of antibiotics for the next 3 months.

How had this happened? I did not have a single cut, scratch or in-grown hair on my left leg. I didn’t have any broken skin between my now fat (swollen) toes. I didn’t have any fungus like Athletes Foot on my feet. I did have Lymphedema.

I became aware, in just 24 hours, with what is every lymphie’s biggest nightmare. Cellulitis. Cellulitis can go septic like mine did. Cellulitis can do this in a matter of hours like mine did. Cellulitis can kill. Luckily, mine did not.

This was the first glimpse for me, that lymphedema wasn’t just a cosmetic issue. Luckily it is still my only hospitalization from cellulitis. I am not a person prone to get this regularly. But some people with lymphedema are prone to cellulitis and hospitalizations can occur multiple times a year. I was never warned by the vascular surgeon I was seeing that this could happen.

This is when, with hind-site being 20/20, we should have sought out a doctor who knew lymphedema. Again, according to the vascular surgeon, if I had been wearing my compression more I wouldn’t have gotten an infection. At this time he did say that my lymphedema was primary in nature, more or less saying that since I didn’t have a reason to have lymphedema, but I did that made it primary something was just wrong with my lymph system. Don’t run, don’t pound, wear ugly compression. This time I was listening a little bit better after having a life threatening infection.

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What I Did Right, And Didn’t Even Know

After being diagnosed with Lymphedema (LE) I really believed that what I was dealing with was cosmetic, my fault, and as long as I didn’t pound my leg and wore the ugly knee high everything would be okay.

Luckily, I was a swimmer who did both swim team and synchronized swimming. I was diagnosed with LE at the end of May and started swim team and synchro again the 1st of June. My leg quickly returned to normal, and I wore the ugly knee high, some. Most of the time, once the swelling was down, I didn’t have much swelling. I believe that one summer, and my love of swimming and being a swimmer in high school (spending 3-5 hours a day, 5 days a week, in the pool in girls swim season and 2 hours in the pool 5 days a week, in the offseason) is the main reason why my Lymphedema has remained mild. (That and maintaining an active lifestyle as an adult)

What I didn’t know then, that I know now, is that swimming especially deep water exercises like synchronized swimming are one of the best therapies for Lymphedema. Water is the only thing that will conform perfectly to the contours of your body. Water naturally applies graduated compression, the deeper you are the more pressure. So water can provide the only perfectly shaped evenly distributed graduated compression to your limbs. This compression is what all compression garments are trying to mimic, but they will never conform perfectly to all the contours of the human body like water can.

The second best thing about all of this is I was moving, a lot! Lymph fluid is very thick and sludge like. It carries the garbage your body doesn’t want in its cells away from them. Movement of your muscles causes a pumping action to the lymph system that helps to keep that lymph moving. So I had the perfect compression, with hours of movement almost every day!

I was also very active in band and chorus, perfecting diaphragmatic breathing. Deep breathing is also very good to help keep your lymph moving. I was in marching band and concert band, I was in multiple choirs. Without even knowing it, I was doing Lymphedema exercises, while doing something I love.

None of this information was shared with me at the time of my diagnosis. These were things I was doing because I was an active, athletic, involved in music, 14-year-old! I was doing all of the best things someone newly diagnosed with Lymphedema could do for themselves, and loving it! (Okay, so I wasn’t great about wearing compression every day back then, my leg didn’t seem to need it, as it hardly ever swelled anymore.)

The part of me that will always identify as being an athlete, who just so happened to self-select swimming as my sport of choice, set me up for a lifestyle that would keep me active and doing many of the right things without knowing it, for a long time to come.

Movement is a lymphie’s best friend. Sitting still, not moving, is a lymphie’s worst enemy.

The Diagnosis

“Don’t you just hate it when you wake up in the morning with a swollen ankle!”

That one sentence, set into motion the three worst months of my life. I was 14 years old, an eighth grader, and for the past week, I had been waking up with an ankle that was more, and more swollen. As an active young lady who was constantly running about, riding bikes, figure roller skating, swimming, gymnastics etc. I assumed I had sprained my ankle, even though I didn’t have any pain, and it would go away. As I was getting ready for school I showed my older sister my left ankle and uttered, “Don’t you just hate it when you wake up in the morning with a swollen ankle!” queue eye roll and shrug as only an eighth-grade girl can do!

My sister’s response was that no, that isn’t normal and queue, “MOM! you need to come look at Brenda’s ankle!’

I won’t say I remember exactly what happened at this point, I am sure I saw my family doctor and he ordered a test when that test was negative he ordered another test and so on and so forth. I drank nasty concoctions and was scanned. I was given shots and scanned by a different machine. The test, that to this day 26 years later, still haunts me is the one where I lay on an x-ray table as the doctors tried to find a vein in the top of my swollen foot for over an hour and a half. They simply couldn’t find a vein with the lymphatic swelling that was present, not that they knew it was lymphatic swelling yet, this test was looking for leaky veins. Eventually, they found a vein, worked on injecting the dye they were going to watch with the x-ray and blew the vein in the foot and added a huge fluid lump to the top of my already swollen foot.

The results of this incredibly painful test, that there was nothing wrong with my vascular system. This, however, brought me to the attention of a vascular surgeon who had seen this before. Since we had ruled out cancers, and many other scary diseases, and vascular issues this had to be Lymphedema because everything else has been ruled out.

We met with the vascular surgeon who told me that Lymphedema would make my leg swell, was mainly a cosmetic issue, that I probably caused by something I had done, don’t run and don’t do any high impact exercises and here’s a script for a knee-high compression stocking see you next year.

With no understanding that I just received a diagnosis that would change my life forever, that there could be major complications (cellulitis), and many things to consider to manage my LE. I left not knowing that my condition was PRIMARY meaning there is a genetic component that caused lymphatic malformations in my leg, believing I had done something wrong to cause this, and that I could do more damage by continuing my active lifestyle.

This happened back in 1992, I don’t believe much was known about LE back then, the vascular surgeon (surely had seen LE he diagnosed me but looking back he obviously didn’t really know what it was or what else to do for me) did not put me in Complete Decongestive Therapy (CDT), or recommend Manual Lymphatic Drainage (MLD), a pneumatic pump was not suggested, basically here’s your diagnosis be happy it’s not cancer or something worse wear these ugly compression knee highs and you’ll be fine.

It would be sheer dumb luck, that I did the best things possible for my lymphedema in the next few months to reduce the swelling in my leg, wear my knee-high and seem to be only mildly inconvenienced for the next 18 months. I learned about the complications and ugly side of Lymphedema at 15.