New to Lymphedema

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New to Lymphedema

Postby JohnW » Sat Jun 26, 2010 9:36 pm

Hi folks. After 7 years of being told my swollen, dripping legs were normal, I now know I have lymphedema. Both legs are swollen, both are dripping (for several months currently), in fact if I stand still for one minute then step away, the amount of fluid on floor can be splashed like a rain puddle. Normal. All my doctors said so. Nothing wrong. 7 years ago, just my left leg. Dentable, Stage I obviously. Today? Both legs with cellulitis. Stage III. I was wondering why I was shivering infront of my heater set at 95 degrees with the outside at 105. Now I know. I found out from an online friend, enough to send me me to several lymphedema websites. Yep. that's me!
I called/yelled at hospital and had appointments the next day (this would have been June 25, yesterday). They put me on 2000 mg of antibiotics to break up cellulitis, wound clinic (also where their lymphedema experts/PT's are) appointment, also set me up for internal imaging of my heart to eliminate poor performance as a cause. I also have a cellulitis followup on next Friday.
I am glad know what is wrong, but I haven't a clue of what to expect/do. Any resource locations/suggestions? I figure YOU are all the experts, what can I expect? What do I demand from docs?
Thanks all!

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Re: New to Lymphedema

Postby joanne johnson » Sat Jun 26, 2010 11:16 pm

Hello John. I read your story and was shocked that no doctor was able to figure out your problem and take care of it. We have all had problems concerning the ignorance of the medical profession but 7 years111

I am just another person that also has lymphedema and alot of experience. It does sound like you are finally on track to get some real help. Now things will start to get better for you. It will take time so be patient.

I'm sure you will be hearing from Pat O'Connor and he is an expert. He will give you sound advice and alot of encouragement.

I am wishing you the best of luck. Please keep us posted. We share and understand your problems as they are our problems too. Hang in there JohnW.
joanne johnson
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Re: New to Lymphedema

Postby patoco » Sun Jun 27, 2010 9:43 am

Hey John :)

Super welcome to our family :!: :!: :!:

Like Joanne said we all have some nightmare stories to tell about the medical profession and it's horrible lack of knowledge regarding lymphedema. Seven years though is unreal and inexcusable.

You may want to read over our page on

Leg Lymphedema ... lymphedema

It gives a full description, info about, complications, treatments etc that should be of help.

I would also demand (not request) demand that your doctors give you a referral to a Certified Lymphedema Therapist. It is imperative that you (1) be evaluated (2) immediately being a treatment program to reduce/manage the swelling.

If you can get on a solid treatment/management program and can get the swelling down that will help in terms of cellulitis and the draining. You'll be amazed to at how much it help the ole "quality of life" issue. You'll be able to do so much more of the things you enjoy doing.

I've seen pictures of legs that you would think could never be helped, really transformed by a good therapist.

BTW, with draining that bad, your body has lost/does loose a great deal of protein, so I would have them check your blood protein levels. If it is low, that would add to the swelling. When we have draining like that, even though the protein in the lymph fluid is waste protein, our bodies see it as a protein loss and begins "dumping" protein into our system to make up the difference.

That fluid is called

Lymphorrhea ... orrhea.htm

and this page explains what it is.

After seven years, the time has come to get help for you. read through the above info, get a referral to a certified therapist.
If you have any questions or concerns, no matter how big or small, please don't hestitate to post them.

We're all here for you :!:

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