full body lymphedema

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full body lymphedema

Postby mama » Fri Jan 05, 2007 4:30 pm

My husband was recently in the hospital for breathing problems. Turns out that the lymph fluid is working its way into his chest now too. It started in his foot 4 years ago. We've been afraid to wrap because that just pushes the fluid farther up and it's not being drained out of his body. He is filling like a water balloon! (I'm sure you all know the feeling.)

He weighs over 500 pounds total now and he gained it all in a couple of years! Anyway, doctors who came to see him estimate that he has about 300lbs of fluid on his body. They said they have never seen anyone who has a "complete lymphatic shut-down" like his. What are our options if there are no working lymph nodes to filter it out? Where do we send the fluid to during MLD? :?

Is there anyone out there who has it in their trunk too? Some days his arms are swollen, but it's not officially there yet. Both legs, groin and abdomen have been taken over. What happens when it gets into his chest?? The pressure on his lungs is heavy and he is now dependent on oxygen.

Why can't they just drain it? :evil:

Thanks for letting me vent.

~Stacy
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Postby silkie » Sat Jan 06, 2007 1:27 am

Hi Stacy.

What a time your family is having,
I do ----have done all over MLD from the beginning of my treatment for leg lymph.

i think of toothpaste and getting helping that fluid up my body to the exit point just at the base of the neck like you would push the toothpaste carefully up the tube so as not to leave any behind

just how i picture it in my head when i am doing it

As far as the system breaking down as you describe well Pat has been there these past months I am sure he will respond to your posting

I do believe in MLD being our best option for helping ourselves at present
it takes time and patience but its time that is nessessary to keep some control

huggggggggggggg

Silksxxxxxxxxxxx
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Postby patoco » Sat Jan 06, 2007 1:53 am

Hey Stacy :)

I am so very sorry to hear that your husband is experiencing such an amount of swelling and fluid retention.

This year I have had that experience and was infact in the hospital from Nov 12 - Dec 23rd specifically because of that....and was in again from Dec 27th- Dec 31st from a partial lung collapse tied in with it all.

But, please I can only implore (ok beg) you not to have a debulking procedure done. It will cause terrible future problems and will do nothing to resolve the swelling in the abdomen and chest (lungs).

You are absolutely correct that for right now though, the bandaging or the use of compression sleeves is going to be very dangerous. You could generate congestive heart failure by to much fluid in the thoracic cavity.

However, if the fluid is in the heart/lung cavity, it can be safely drained. I have had that done several times...each time removing between 2 and 2 1/2 quarts of fluid. That will provide immediate help in that area.

I was to the point of not being able to breathe unless I was standing up.

Another point that I would urge all of us who are experiencing all over LE is to make sure the doctor tests the blood protein level. There seems to be a cycle about this, that once it starts it can do all kinds of funky (bad) things to your system.

My albumin level was found to be 1.5, which is disasterously lower then the acceptable range. The normal range is generally from 3.4 to 5.4 g/dL.

If you albumin level drops that low, your body will start to bloat like there is no tomorrow...as you simply are unable to process any fluids. I'm on a super protein diet now and have raise my level to 1.9 :) and am going to do all I kind to get it back to that normal range.

Your hubby's may be fine, but absolutely good idea to make sure.

Now, there are also times, depending on the seriousness and/or life-threatening situation in lymphedema when what you normally hear about treatment will change. I had 60lbs of fluid sitting right on my abdomen/chest. It was imperative that this fluid be removedd...period....
To do that, while in the first hospital I was given lasix injections three times a day.

Massive massive help. While at the first hospital, I lost just over 50lbs of fluid from that alone.

I was then transferred to the Healthsouth Rehabilitation hospital in Birmingham, Alabama. There, I went on a specific regime for the LE itself.

If you go to an inpatient though, the one thing I would do is to have the treatment plan given to you in writing and would insist it be followed to the T.

The treatment should include:

(1) Being given complete CDT by the therapist

(2) Being taught how to do self CDT. Now you will need to learn this as well, because for your hubby, it might be almost impossible at this point for him to do the leg massage himself. You will need to consistently do this daily.

(3) Continued use of lasix. However, by the time, you should be able to use the pill form. I am continuiing on this until we get the blood protein level where it should be.

(4) Bandaging...both having it done by the therapist, and learning how to do it correctly yourself.

(5) Exercise....absolutely essential as it will not only help get the body strengthened, but exercise/movement facilitates lymph movement and flow.

(6) Water exercises...another excellent method of helping to clear the fluid out.....for me, it was "Mahvelous"...absolutely loved that part.

(7) Diet. Important to eat in a healthy manner to not only get the nutrients, but help maintain regular body weight.

Also, because of the fluid in the chest, all this does need to be supervised by a LE doctor and Birmingham has Dr. Paula Stewart who sees you everyday while you are in there.

This isn't a quick fix like debulking...but it is a way of a long term solution and help.

Sorry this is so long :wink: but I hope I have covered everything....if not I'll post again.

If you have questions, please do not hesitate to ask me.

I am also going to post this in the other area you wrote in, so you'll be sure to see it :D

I wish the very best for both you and your hubby.

Pat O
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Postby coyote » Sat Jan 06, 2007 4:35 am

Hi Stacy,

Just wanted to lend my support to you...I also struggle with all over lymphedema, problems with pleural effusions and fluid moving from one area of my body to the other when I am compressed...kind of like squeezing a tube of toothpaste.

As best as I can tell, it is a rare problem that your husband, me, Pat and a handful of other LE patients in the online groups are having with lymph fluid moving to other parts of the body. Most people have lymphedema in one, maybe two limbs...not all over.

Its difficult to get adequate information about the kind of problem you described. Fortunately, you have come to the right place for support. Hopefully you husband can get hooked up with a lymphedema specialist doctor. That would be a really good thing.

Hope your husband gets the help he needs...I have an idea of what he is going through, having similar problems myself, it is no picnic.

I also have an idea of how difficult it is for you to watch his body grow increasingly out of control...it is scary to ones family members, too. For example, my mom has lymphedema, too, and she chooses not to manage it and I watch it get worse and worse...makes me feel pretty helpless.

Wishing you all the best in this new year...hoping you get some answers soon!

Julie E.
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Postby patoco » Tue Jan 09, 2007 2:58 am

Hi Everyone

I just wanted to add that I have put illustrations on lymphnode stimulation and pathways to follow while doing self MLD on

Lymphedemaville

http://journals.aol.com/patoco2/Lymphedemaville/

As time permits, this weekend I will be adding illustrations for wrapping, and even illustrations on specific water exercises.

You can do the lymph node stimulation and self MLD everday.

Pat O
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Postby Kim » Tue Jan 09, 2007 9:01 pm

Thanks, Pat, for the MLD illustrations!! It was kind of like a refresher course...making sure that what i've been doing was correct.

I'm sure others will appreciate it as well.

Kim :D
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