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.


Author: Life of an LE athlete

I have had Lymphedema in my left leg since 1992. Follow me through the ups and downs of living an active lifestyle that doesn't let my Lymphedema limit my life. I have learned to maintain an active lifestyle despite having Lymphedema.

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