Tag Archives: primary lymphedema

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.

My garments are in!

After three weeks of wrapping, my garments have come in: I’m now the proud owner of a brand-new Mediven stocking and a Solaris Tribute nighttime garment. Wahoo!

I’ve had both open- and closed-toe stockings before but I didn’t find either to be particularly comfortable, so I decided to go a different route with my new one. I’ve never had a stocking quite like this – I love my new Mediven! My new Medi is closed-toe but each toe is separately enclosed, with sort of a “toe socks” aesthetic. Having each toe separate gives it that much more individual compression, which I need because my toes and forefoot are my most affected areas. It’s super comfy, too – the team at GBMC and Caring Touch Medical did a great job measuring me for a custom fit. I’m looking forward to ordering these in a couple more colors when I go for my follow up appointment next week.

For nightwear, I got a Solaris Tribute. I’ve had a Tribute before and so I’m already pretty used to it, although my new one is a little different: it’s colorful! Solaris offers the Tribute in a small variety of colors now – a simple pleasure for us lymphies – and I got mine in a pretty shade of navy blue with two different sleeves: one jade green, and one red. I also got a set of toecaps to wear at nighttime for some extra compression. So far so good although I’ve been taking it off in the middle of the night, in my sleep. Not quite sure what that’s about but I think after a few more nights of wearing it I’ll get adjusted to the new fit!

I’ve been really consistent about wearing my stockings these past couple months, and getting new ones is strengthening my resolve to continue doing so. If I am able to wear my garment and have my leg wrapped during summer – the most difficult season for lymphies – then I can keep it up during the fall and winter!

What types of garments do you have? Which ones do you prefer?

All Wrapped Up

The other day I began a four week process in which my affected limb is wrapped in a series of bandages and foam padding to create compression. The goal is to get my leg down to the smallest size possible so that I can be measured for a new compression garment. The smaller the measurements, the tighter the garment will be – and the better the swelling will be managed!

So what exactly does wrapping entail?

First, the lymphedema therapist took out a large sheet of foam padding. The foam, when wrapped under tight bandaging, helps to contour and compress the leg. She measured alongside my leg and foot and cut out a couple different pieces: an arch pad, a front piece, and a back piece. (These will be used later.)

Next, she wrapped my leg in Artiflex cotton batting, like the kind you’d use to keep a cast in place. This went from the bottom of my toes all the way to my knee.

After that, she put the foam pieces on, wrapping them loosely in place with a regular Ace bandage.

After that, she individually wrapped the first four toes of my foot.

Next come the bandages! The lymphedema therapist used four rolls of Rosidal short stretch bandages – two 8 centimeter and two 10 centimeter rolls. She wrapped my leg with tighter compression at the bottom, the gradient compression helping to move the lymph upwards.

The final product:

I go to the clinic almost every day for four weeks, and each day we do the same: unwrap, perform manual lymph drainage, re-wrap. It’s only been three days but I’ve already noticed a difference when the bandages are removed – a lot of the swelling is down and I’m really excited to get fitted for my new garment. Wrapping is a worthwhile process to undertake, something I’d definitely recommend talking to a lymphedema specialist about!

What are your experiences with wrapping? Have you found it to be helpful?

Yesterday’s Overdue Appointment

I feel so fortunate to live near a lymphedema clinic, especially one as personable and competent as GBMC’s. My appointment yesterday went really well: they said that I had done a good job maintaining my swelling since my last visit three years ago, and that made me feel a lot more confident about my ability to take care of myself. I truly have made a daily effort to wear my garments and to have that recognized is super encouraging!

I met with a nurse, a doctor, and a lymphedema therapist, and between the four of us it was decided I’d start a physical therapy program where, in addition to the physical therapy itself, the therapist will be wrapping my leg in tight bandages each day for about a month. This process (“wrapping”) will allow for smaller measurements and a garment with tighter, more effective compression.

I’m excited to get this started; I did wrapping three years ago but am definitely overdue and in need of another new garment. I start sometime next week – hooray! Although I’m not relishing the idea of wearing layers of bandages in 90+ degree weather, I know it’s going to help me a lot in the long run.

What’s your experience with physical therapy and wrapping?