My Story - Nessa

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

Moderators: Birdwatcher, jenjay, Cassie, patoco, Senior Moderators

My Story - Nessa

Postby patoco » Sat Jun 10, 2006 4:02 pm

My Story - Nessa

Originally posted 01/10/2004

My Story begins in 1997. I was gone for the Memorial Day Weekend and was severely sunburned and windburned over the Friday and Saturday. I woke up that Sunday morning with the left side of my face so swollen that I was rushed the hospital and was diagnosed with sun poisoning and of course the sunburn and windburn. The following March of 1998 I was diagnosed with the LE. The first DR to diagnose me was my Primary Family Doctor. But he said that it was just edema and I wouldn't settle for it....he sent me to a Vascular Surgeon who gave what I had a name. I was diagnosed with Primary Bi-Lateral Lower Limb Lymphedema with onset after puberty. We went over my medical records and noticed that whenever I hurt my legs it would take alot longer for swelling to go down compared to that of a healthy person. Though my original Vascular Surgeon was very knowledge I wanted to know more. He sent me to a colleague of his that he went to medical school with who knew more about the Lymphatic System than he did. I have been with this doctor since 1998 and I can't say enough about him. He is the best that I have found that really knows about LE.

My cellulitis bouts have been horrorendous. My first bout nearly killed me. It was July of 1998. I had been told I had the flu by the family doctor I had at the time and he just said drink plenty of fluids. I remember being on my couch for 2.5 days not getting up for anything. I finally went to the hospital after my sister insisted that she could take care of my kids for me. He ran tests on me and put me on alot of antibiotics while in the hospital. I didn't know I was in the ICU of the hospital until after being out of the hospital and receiving a statement. I don't remember the first 3 to 4 days much of the 14 day visit. I also learned that the dr had ordered warm wet compresses for my legs. He had told my family it was to help get rid of the infections. I was sent home with a bag full of antibiotics and was told to take it easy. I finally started searching for more info and found several books on Lymphedema.

My book recommendation is "Coping with Lymphedema" by Joanne Swirsky, RN. I found out alot of information from that book! I found out that you DO NOT USE WET OR WARM COMPRESSES AT ALL. This will spread the infection through out your body and could cause permant damage to your body. The next time I had a cellulitis attack I refused the compresses and several other things the DR had ordered. When I did that he sent a letter to my insurance stating that I refusing medical treatment and that I was being beligerent to him. I replied to them on what he had been doing. They dropped him as a provider from their company. Shortly after that I found the DR I am with now and he totally understands my frustrations and loves that I pile the info on him. He said if it was not for me some of his other patients who have Breast Cancer or any injury to the Lympatic System would not have the info that I have given him.

OK....Now that I rambled on....
Have a great weekend!

Thinking Positive,




Gee, My doc told me to treat my last bout with wet hot compresses too! Gee willikers, and ya wonder why it won't heal. My LE therapist degrided my wound yesterday, today the massage was a bit painful, I gritted my teeth and just hung in there. I know it is necessary for me to get well, so I just kept saying it will be over soon! Thank God that 90 minutes ended when it did! PHEW! Next week, she will wrap above the knee so we can try to make the thigh smaller too. I am excited!I know it means less mobility, but I have to do it!Thank you for your story, I learn a little more as I read.

Hoping to increase awareness of Lymphedema, early diagnosis is key.
User avatar
Site Admin
Posts: 2175
Joined: Thu Jun 08, 2006 9:07 pm

Return to Lymphedema Personal stories

Who is online

Users browsing this forum: No registered users and 5 guests