New member saying hello.

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New member saying hello.

Postby Scicchi » Sun Nov 21, 2010 12:41 pm

Hello everyone!

My name is Matt and I'm a 34 year old mailman and have had lyphedema in my left leg for almost 9 years. I have read many stories on the site before, just never registered until recently. It has been an absolutely wonderful source for about any questions I've had, so thank you to everyone!

I noticed one day that right above my sock, my leg was bigger. Kept an eye on it and it continued to look like that so I went to have it checked out. Our old family doctor originally said it was probably lymphedema but he wanted to do some tests to make sure. "Some tests" turned into 4 months of test after test. Ultrasounds, liver, heart, kidney, everything else tests, this and that, until it was finally agreed upon that it was indeed primary lymphedema. The vascular surgeon wrote a prescription for some 30-40 stockings and sent me on my way. Only probably was the leg gradually continued to get bigger.

I am a mailman and there is a custom shoe store on my route, and the ladies knew the problem I had. After a year or so and after mentioning to one that the stockings don't seem to be helping much, she asked, "Well, did you ever go see Darcy at the rehab right next to the hospital?" I asked who Darcy was and she says, " Darcy is the lyphedema specialist up there. She shows you how to wrap it and do the massages and whatnot. She is really great" WHAT!!!???!!! No one that I was in contact with at the hospital for the whole time I was getting tests done, especially the final person I talked to that told me to get the stockings and be on my way, no one ever thought to mention that there was a specialist for this in a building 300 yards away from the hospital!?

Needless to say I got to go see her and she changed my life. She showed me all the wrapping and massaging to be done and got me a custom made stocking that is actually for lymphedema and we got the size of my leg down considerably. She was baffled why no one at the hospital mentioned her name to me. It was the first time in almost two years I could see an improvement and I felt at least it isn't worsening. I was content with that.

Unfortunately after 4 years or so, I got very lazy. I began skipping the wrap job at night, missing a few nights, then a few weeks at a time. I wouldn't wear the custom stocking because I constantly had to use the glue to keep it up and as soon as I would sweat(think mailman in the summer) it would fall. Besides, my leg didn't *seem* to be worsening so who cares right?

Fast forward to 1.5 years ago and I had rash on the inside of my "bad leg's" thigh, in the groin area. Didn't think much of it, would put stuff on it once in a while, it was there maybe two or three weeks. I got home one day and felt horrible and declined RAPIDLY from there to the point of not wanting to make the seven mile drive to the hospital and just calling an ambulance, I felt THAT bad. They ran some tests, gave me some fluids, and sent me home. I actually did feel a little better but still bad. The next morning almost my entire left leg was streaky, blotchy red. At almost the same time my wife noticed it, the hospital called and said I have an infection and they'll call in antibiotics right away. My wife told them about the redness and the woman said, "Yep, he has cellulitus, the antibiotics will take care of it" Saw my family doctor the next day and he was not pleased that the hosptial sent me home and that he would have admitted me, but since I felt better and I had an appetite, etc. , we'll see how I do and thank God it continued to get better pretty quickly.

I went back to my therapist and explained how I got lazy, what had happened, etc. and she said it is kind of common for this to happen the first time you get cellulitus. Now I know better what could happen, never to let "odd" colors, marks, scratches, etc go unchecked or untreated. If I ever get it again, it will be way too soon.

Since then, I got new custom stockings(one with the waist strap that I LOVE for work) and a toe cap which I never had before. I am also wrapping my toes as well as my leg at night now. I'm not going to say in the last year and a half I never missed a night of wrapping, but they are very few and far between. If I am sitting at the computer, I try to keep my leg up, carry neosporin around with me for any nicks/scratches I get, little things like that. Anything to help prevent what I went through that awful night, I will do.

Sorry for such a long post, but again, I want to say thanks to everyone who asked and answered questions on this forum because it has helped me tremendously.

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Joined: Thu Nov 11, 2010 4:54 pm

Re: New member saying hello.

Postby blubrdfrend » Mon Nov 22, 2010 1:36 am

Welcome Matt. I never thought of carrying Neosporin with me. What a great idea. I appreciate your post. I will put Neosporin in my car and truck.
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Re: New member saying hello.

Postby patoco » Mon Nov 22, 2010 4:29 pm

Hey Matt

Super welcome to our family here!!!!!!!!!!!!!!!!

Thanks so much for sharing what you did as well. I think we have all gone through the "gard" lessons of taking care of our LE.
The really important thing though is that you back on track. :)

It should really really help. It is also a great idea of carrying Neo with you. I have used it for years and swear by it.

Very glad you joined!!! :!:

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Re: New member saying hello.

Postby Scicchi » Sat Nov 27, 2010 9:39 pm

Thank you both!
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Joined: Thu Nov 11, 2010 4:54 pm

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