Lymphie Stories

Lymphie Stories: Kati C.

Submitted by Kati C., November 2012.

I guess my story starts the day I after I turned 17.  I drove home from an activity and noticed that my left foot was super swollen, and painful.  My mom took me the next day to our regular doctor and he looked at my foot and legs and said I was experiencing swelling in both legs but he didn’t know what was causing it or what it could be from, but that it might have happened because I was not fat but on the heavy side.  He was perplexed by the sudden onset though and decided to send me to a vascular surgeon.  A couple weeks later the vascular surgeon set up a battery of annoying testing.  All the tests came back fine.  So he said treat the left foot like a diabetic would and take care of it, and not to worry about it.

So for 6 years I didn’t worry about it.  I graduated high school, started college, and worked full-time.  During those four years of college I gained quite a bit of weight, and often my feet and legs would ache, but I just figured it came from being heavy 180 lbs on a petite frame.

Then the love of my life asked me to marry him.  Well, I decided then I didn’t want to be a heavy bride, and needed to take my health into my own hands.  I joined Weight Watchers, and soon after started working out.  A good friend of mine who was older really liked running and we started running together.  Then another friend of mine all in the same time completed her first half marathon, and I thought if she could do it, so can I.  So I lost 50 lbs through following Weight Watchers and training for a 1/2 marathon.

But still my foot was fat, and I referred to it as my “fat foot”, and often it was uncomfortable.

Then I bought a pair of work boots two winters ago.  I wore them two days to work and had to stop because my calves began to swell over the top of them, the right worse than the left.  I went to a new doctor and showed her what was wrong, and she tried again to send me to the vascular surgeon.  He instead decided to send me to a physical therapist to get “wrapped” for the first time.  That first wrapping session removed 2 cm of fluid off both of my legs.

I was then sent into a physical therapy program for lymphedema, and did the CDT.  I lost another  2 lbs as the fluid came off my legs.  After two weeks with the therapist, I could see bones in my foot again. I had ankle bones that I had never seen before, and I found calf muscles that had been developing as I was working out and losing weight.

It took a total of 8 years, two doctors, and two physical therapists, but finally today I have the tools to keep my primary lymphedema under control.  The biggest thing has been finally finding out what it was, and that I wasn’t a freak, and how to take care of the problem.

This weekend I run my fifth 1/2 marathon and think I will come in faster than ever! To those who know something is wrong, don’t give up;  Keep trying to get answers for yourself.  You are your biggest advocate.  And to those who have this condition no matter how you came by it, don’t give up, don’t let it keep from doing what you want, and take care of yourself because being healthy in other aspects of your life make the lymphedema that must easier to handle.

Submit your story to the Lymphie Life! Use the contact form here to share your personal story of living with lymphedema, and, with your permission, it’ll be posted on the website.

2 comments on “Lymphie Stories: Kati C.

  1. Thanks for sharing! Keep spreading the word!

  2. Susan Troppy

    Thank you for sharing. My daughter is 22 and was finally diagnosed after close to 2 years. She is worried about exercising and living with this condition. Your story is very uplifting for me and I will share it with her.

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