Lymphedema People ™

Hi there, well my father does have extreme lymphedema in which he is suffering from pleural effusions.
I have a new question: Does anyone or has anyone every suffered from fluid in their abdomen area? He got his lung area drained on Friday and his breathing is better, but when you bends over his stomach is large and he is bloated there.
He also has had issues with a non functioning gallbladder and we are in the mist of trying to get him cleared to have it out.

He was admitted the first week of Sept. 09 for jaundice due to a blocked bile duct, so this may just be gallbladder related. I sort of think so, since he also still gets bouts of nausea.

Thanks

Yes i suffer from both. then swelling in stomach gets quite painful and makes it hard to walk..but the worst part is the nausea. Has he had his stomach tapped? (drained). i have to get mine tapped every 6months to releif the pain and nausea. It really helps and its not a painful operation. All they do is num the area then stick a needle in and drain it. the only down side is it take 2 weeks for the soreness to go away and a month 3 weeks to regain a full appetite...you may wanna ask his doctor about it.

carlos,

Hi Carlos

I responded to this in another of the forums too.

Thanks so much for your note as well. You and I both know what this is like and how tough it is so I'm sure your note is a comfort and help!

I wish I could have that abdominal draining, but with me, the scans show the fluids are simply so wide-spread that it wouldn't work well for me

BTW, haven't heard from you in a while - how are you doing?

Pat

That is what I've heard is that fluid in the abdomen is sort of pocket like in which there isn't really a large amount sitting around anywhere.
So, to sum it up, his nausea could be coming from his lymphedema which is moving into that area, or it still could be a symptom of his gall bladder. In this case we really aren't sure. I will say, that the last time he was really nauseated his lab work for the liver ballbladder area came back good, so...one may lean towards this fluid...

thanks all

Yea You Guys Might wanna ask the doc about looking into the pockets of fluid. Cause it seems like that my be the prob I get allot of Nausea too, I was told it was from fluid.

Hi Pat,
Yeah the Fluid in stomach is tough I'm Lucky that they've been able to drain it but I was just told that This will most likely be the last time they can since the Fluid is now all over the place and not in just one pocket...

Other than that Im Doing pretty good I'm Getting Ready to move to Arizona To See a Doctor By the Name Of "Marlys H. Witte". I'm Hoping she could help me out. next month will be 6 years of having lymphedema so I'm hoping she could help get things under control....Have you heard of her? is she a good doctor?.

Carlos,

Hi Carlos

Yes, I have heard of her and she is supposed to be one of the most knowlegeable doctors around when it comes to LE.

Not sure though if she really does see patients anymore and don't really know how "patient" friendly she is.

I hate to hear about the fluid in your ab changing like that. The fact that mine is simply everywhere has really really made it though to deal with. I also made need abdominaly surgery and that ascites fluid pretty much changes the equation to where I won't have the surgery unless not having it becomes a greater risk to me then the medical condition requiring it.

Very frustrated as an ab filled with fluid makes it all but impossible to heal properly.

Do let me know how your visit with Dr. Witte goes, I'll be very interested in hearing your comments.

Pat

I have it in my belly. and if he drained he lucky they can find it. my fluid is absorbed by my body and stored every where making it very hard. it rare too. they do little but bind my belly. and tell me to message or exercise my leggs. I bought a calf messager but button are not clear. I have no luck making my belly smaller but my leggs in hospital got Air Sequential Compression Therapy
that began to do something. I live in michigan taylor area and near u of m. they don't treat lymph edema its the most neglected case of condition ever.
good luck.

Hi Langels!

Super welcome to the family!!!

I hear you about your abdominal fluid. That type is simply the most difficult to treat and get rid of. Mine is like yours, with the fluid distributed throughout the whole abdominal region. With the thoracic duct and right side drainage fields blocked, even MLD doesn't do well.

Is yours backing up into you lungs yet?

Pat

I have much fluid in my abdomen and my docs haven't even considered draining. Do you have to be a certain weight? I am smaller than many PLE patients as I am small bones and have always maintained my weight. Until the PLE got out of control 2 yrs ago. I'm up about 80 lbs! That's unheard of for me. It's hard to breathe, my stomach is hard and bending over cuts off my air. I even had fluid in my breasts. They too have grown and this never happened no matter how much weight I gained. I am a rare case per my LE specialist.

Besides draining, have any of you found relief? The MLD isn't helping. I have fluid everywhere so the MLD seems to be just moving it around.

I could really use some help.
Pinkbear

Hi Pinkbear

Sorry for the delay in responding - been a hectic couple days - too many doctors - too much stuff

The other thing I do is not what lymphers should normally do, but with this type of life-threatening situation we have no choice.
I am on heavy diuretics. Two types - 6 pills a day.

That seems to have at least brought the fluid down to manageable levels. The MLD doesn't help either - at least self MLD doesn't. The lymphoscintigraphy they did basically shows almost a total lymphatic shutdown in the thoracic duct and the right lymph drainage field. There actually is also extreme concern about MLD for me as of the possibility that would push so much fluid into the lung cavity that it could be serious.

I would absolutely have them make sure whether or not there is fluid in your lung cavity.

You sound so much like me as well. Never had a weight problem and actually am small bones too. When this all started in 2006, I shot up some 65 lbs - all fluid and mostly in my ab and chest region. But, your weight should not be a factor here in determining whether or not to drain. It's how much fluid, how quickly it collects and how seriously this is effecting your life and health.

One other thing too is that they were never able to drain the ab - just the lung cavity. The fluid is the ab is simply all engulfing in the interstitial tissues and there isn't a specific "pool" they can tap into to drain.

I am still using the Pleurx drainage kit for my lungs and still removing about 650ML of fluid from each lung every three days.

Pat