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Lymphedema in legs

Heart & Blood Health | Last Active: May 29, 2023 | Replies (129)

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@amkaloha

I know you think I have been sleeping after writing this message! LOL Actually I do spend a lot of time on my back doing what I have to do to keep this lymphedema in check. And yet it never looks any better. At first the doctor thought I just had swollen feet and legs and gave me a diuretic. That didn't work -- only messed up my urinary tract! After that my left leg swelled so much that a wound opened up and I had to go to the Wound Care Center for treatment. They wrapped my legs and said I needed compression stockings. I couldn't put them on myself, so they suggested farrow wraps and a foot piece, but I could not put them on myself either. They also got me lymph leg pumps which they told me to use one hour twice a day. I do use these once a day, but it is a stretch to use twice a day. I kept asking the doctor if there was a lymphedema specialist I could see. Well it doesn't seem like there are any lymph specialists! So she sent an in-home group to see me. There was an occupational therapist, a physical therapist and a lymphedema nurse. The lymphedema nurse was the only person I needed, but it seems like it was a package deal. Plus, she could only come three times a week. I needed these stockings on every day! And this service only lasted one month. I have tried to find someone who could put my wraps on for me every day (it only takes 15 minutes) but can't find anyone. So now I use the leg pumps but don't get the stockings on, so the fluid travels back down into my feet and legs. I walk with a walker as I have bad arthritis in my knees and also have neuropathy in my feet. I know there must be something that can be done for this, but haven't found anyone who can do it!
Thanks for your concern.
Andrea

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Replies to "I know you think I have been sleeping after writing this message! LOL Actually I do..."

So sorry for your frustration with getting local help in treating your lymphedema. I live on Florida’s east coast. Fortunately my primary care doc diagnosed me with lower legs lymphedema. I was referred to Space Coast Lymphedema Clinic in Viera, Florida. It was only 1/2 hour from my home. That was helpful when I was going 2-3 times a week. Documentation including measuring my legs before and after using the Lymphapress. After a few months my insurance approved the purchase of a pump with two thigh high boots. I now use the pump after dinner each night for an hour. In the morning, after showering I put on the thigh high open toe compression stocking. Those two things have kept the swelling of the lower extremities at bay.