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Full body lymphedema

PostPosted: Sun Jun 01, 2008 6:29 pm
by lilsue62
Hey all I'm new to this. I have lymphedema also. However, I was born with it and now i am told that its through out my body. I now have veinous insuff in my legs and signs of it in my back. My son says that my back looks like someone beat me up. I do have one question for everyone who has lymphedema.
I have had 2 surgeries since i got sick and when they removed my gall bladder and my uterus they were larger then normal. my gall bladder was 3 times the normal size and my uterus was 6 times normal size. Is this normal for people who have lymphedema?
I seem to get sick alot since i found out i have lymphedema is that normal also? I am in a lot of pain and my doctor is trying a mix of different meds to use but hes getting frustraited. Any suggestions?

Thank you,
Lilsue62 :cry:

Re: Full body lymphedema

PostPosted: Sun Jun 01, 2008 10:50 pm
by patoco
Hey Lilsue :D

Want to give a super welcome to you to our family here :!: :!:

My heart really goes out to you experiencing that all over lymphedema. I have that as well and it is soooooo miserable.
After fifty years of LE being only in my legs, my whole body lymph started a bit over two years ago. Chest, abdomen, back...I looked like a walking water balloon.

Last Fall, I had al all over lymphscintigraphy test done. It showed that the lymph fluid through my thoracic duct is almost completely shut off. The thoracic duct is the central location where lymph is literally "dumped" back into the venous system where it is finally carried to the kidneys and eliminated.

If that shuts down, then the fluid is going to collect everywhere.

It got so bad, that my lungs began filling with fluid and were having to be drained at the hospital every three weeks or so (each time they removed 2 1/2 qts from each lung).

We have been so desperate that we did a couple things out of the ordinary.

First, while diuretics should never be used to treat limb lymphedema, the all over lymph I was experiencing was extremely life threatening. We had no choice but for me to try them. I take diuretics twice a day and that has helped somewhat.

For the lung situation, last month I had what is called a pleurx catheter put into each lung cavity. A tube comes out each side and I am able to actually drain my lungs myself at home. Every three days I drain about a pint and a third out of each lung. OMG...this has been such a help...unbelievable. Between that and the oxygen (24/7) I'm on now, finally I am able to breathe again.

The other thing that can come with all over LE is a protein-loss situation. When you have abdominal lymphedema, the lymphatics of the intestinal area become dilated. As a result, your body no longer is able to process fats and, importantly, proteins. Instead of absorbing proteins, you begin loosing them. When they tested mine, they were shocked at how low my protein level was. The bad things is that protein deficiency also causes edema. Its kind of like a viscious cirlce that starts.
I am also on a high protein diet too, trying to get that level up.

The gall bladder and uterus problems don't sound related to LE or at least I haven't heard of them being associated.

But that pain you mentioned. OMG, yes....beyond unreal. I finally accepted pain medication last year. I don't like being on it, but it really has increased my quality of life.

I've been on the fentyl patch which I change every three days. As a backup, I was prescribe a mild codeine med. Like I said, I really do not like being on them...but at least now I don't hurt at such a mind numbing level.

You mentioned getting sick a lot with other things. that is related. They have found that those of us with LE can have a dysfunctional cell-mediated immune response. Your immune system is basically composed of two halves. One is called cell-mediated. In the test they did, mine is a disaster, so I'm not surprised to hear you are experiencing those problems.

I am on preventative antibiotics. One bactrim a day. It has worked very well for me as far as infections go. Several years ago I was having infectinos so bad that there were times I was on aouble IV antibiotics for months at a time.

Gonna close for now - I sure hope thi info helps - and again welcome to our family.

If you have any questions, please don't hesitate to ask.

Best to you :!: :!:


Re: Full body lymphedema

PostPosted: Mon Jun 02, 2008 10:11 pm
by carolynsalt
I too think I have the full body lymphedema I am 64 years old 2 years ago i found out from Mayo Clinic . they said i had lipedema . i have in my legs ,Arms , stomach areas, thank God i know what i have now it is a uphill battle pain & all water pills done me no good either almost killed I have to wear the support hose . i think i have what they call Lipo Lymphedema. they wont do nothing about my arms because i just have Lipedema in them . I have had this all my life too. Pat would you please tell me if medicare pays for the support hose I will be 65 in july Thanks carolyn