Tips on Inpatient Lymphedema Treatment Centers

Tips on Inpatient Lymphedema Treatment Centers
After just having spent a couple weeks in an inpatient lymphedema treatment center, I had a few thoughts I wanted to share about what to look for and expect from such a facility.

Staff:

1.) What is the training and certification of the lymphedema massage therapists? This includes where they received training, how they were certified, are they LANA certified and do they partipate in orgnizations like the National Lymphedema Network, where they are kept abreast of new developments and treatment modalities.

2.) Is the treatment supervised daily by an actual physcian or is it operated basically by a lymphedema therapist?

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/MLD by the therapist

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

(3) Use of diuretucs. Even though the use of diuretics is basically opposed in the treatment of lymphedema, there may be times of urgency, when the fluid accumlation can be life threatening that diuretics may be needed. This has to be discussed with your lymphedema doctor to see if it is necessary and appropriate for you.

(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. If you are overweight from bad dietary habits, you are seriously complicating your lymphedema and this issue simply has to be addressed and worked on.

(8) Examination. If your full body lymphedema is a sudden or "new" experience, I personally feel there should be investigations to see what might have triggered the incidence. Sometimes, such as in my case, there wasa disasterously low blood protein level which contributed to the cycle.

(9) For the leg lymphedema, the treatment should not include the use of these so-called lymphedema pumps. These cause further damage to the micro-lymphatics, contribute to increased fibrosis and can be responsibile for the development of genital lymphedema.

Special Consideration: If you are experiencing breathing difficulties, you need to have at least an xray to determine if there is a pleural effusion. If so, this needs to be drained and followed up on.

Finally, I would really suggest you write down, completely, your expectations of the treatments and promised results. Give a copy to your doctor and discuss it with them. Keep a copy for yourself.

Just a few thoughts, I wish I had thought of before my experience.

One more thing, seriously ask yourself and the lymphedema doctor if infact an inpatient stay is really what is needed - or canyour expectations and needs be met successfully in an outpatient setting.

Pat O'Connor