lymphedema reality check

I’ve got a great case of poor-pitiful-me today. Actually very teary. Just frustrated and angry and…why me?

Today was the day that I both get measured for a new compression sleeve and glove for the lymphedema control and have the arm’s general health evaluated.

The measuring part was a breeze. I have some increase in size. I suspect that it is in part due to the increase in weight I have, but that doesn’t explain it all completely.

Then we got to the general health. In my forearm, along the outer edge and top, and in the upper arm, along the back and just above the elbow, I have fibrosis. In terms of possible severity, it could be viewed as initial, but it is more ‘intense’ in the forearm than in the upper arm.

What is fibrosis, you ask? A very good question and I’ve searched many a site to find an answer for me too. Let’s see, I’ve got this:

  • As the swelling continues and as the fluid changes to that protein-rich fluid referred to a lymphorrea, you enter into stage two. In this stage, the tissue become very similar to a grape (best image I can think of). Already it is becoming much more difficult for antibiotics to reach bacteria and it becomes less responsive to the decongestive therapy.
  • ..the fluid in the limb becomes so dense that at the touch feels very hard. The swelling of the arm or leg is not indication of the fibrosis, the hardness of the limbs is.It is very important to receive very early treatment for lymphedema, such as drainage and massage to keep the lymph flowing to avoid too much accumulation of the lymph in one place as the treatment of the fibrosis will become more and more difficult if the swellings are not dealt with.The protein-reach lymph changes slowly to a solid substance. At this stage antibiotics can’t reach the bacteria in the swollen area due to the density. With inconsistent or worse no treatment at all this becomes even more problematic as the lymphedema enters the next stage.The tissue inside the swelling becomes hard as rock and presents itself as a very serious condition and may lead to cellulitis, which requires hospital treatment. Because the orally taken antibiotic are not able to penetrate the dense tissue thoroughly bacteria can survive in the little pockets inside the swelling. That naturally causes reoccurring infections. Therefore, the patient is generally treated with IV antibiotics.Not treated properly the fibrosis is building up more and more. The condition may lead to very dangerous deep venous thrombosis, thrombophlebitis or both. Additionally, the patient may well start experiencing the pressure on the nerves.

I think I’ve got an understanding now. So what does this mean?  Though manual lymphatic massage is always a possibility, my RMT and fitter actually believes that “bandaging” has a chance of helping. This would be a sleep or nighttime therapy. It could take up to 2 years to see results. Hells bells. Can’t anything be faster than ‘hurry up and wait’?

Bandaging is actually assisted by a newer product by Solaris called Caresia, its description is as follows: standard-sized bandage liners that simplify complex multi-layered bandaging protocols while enhancing therapeutic outcomes in the active phase of therapy.

The problem? Bandaging therapy may not be covered by my extended health. At $245, this expense is ill-timed.

As some, but not all, know, Dad is moving to Moncton to live with Art and I’m going to Ontario to help him pack his life for the move.

The cost upsets me because it isn’t budgeted for and will make things very tight. In my mind though it’s the fact that I’ve done everything ‘right’ about wearing my compression garments, taking care of myself to prevent infection and everything else to deal with my lymphedema. So why is this happening? This chokes me, but I’m forced to admit, that even doing the ‘right’ thing might not be enough. Lymphedema and any disease or condition takes its own path, regardless of best intentions.

It’s not been my best day. I admit.