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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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.