Certified Lymphedema Therapists in the United States, Complex Lymphatic Therapy Courses, Massage Therapy Definitions by State Boards, LANA, Choosing a Lymphedema Therapist, Resources for Locating Lymphedema Treatment, in patient treatment

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Postby mama » Fri Jan 05, 2007 3:10 pm

My husband was recently hospitalized with what was believed-to-be pneumonia or a pulmonary embolism. Turns out it is lymph fluid that has surrounded his lungs. The doctors estimate that he is carrying about 300lbs of fluid - it is not being drained because he has a "complete lymphatic shutdown" (doctor's words.) So wrapping is not going to work because we're only pushing it up from his legs towards his vital organs!

So who knows of someone who is still willing to do the de-bulking procedure? We know of the side effects, but it is worth his life. The doctor's give my husband one year to live if it is left untreated. (He is 29 years old!)

We're looking for an in-patient program that can work on him around the clock. I can't keep up with it!! Someone mentioned Cleveland Clinic. Has anyone gone there?

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Postby patoco » Sat Jan 06, 2007 1:51 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 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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