UOAA Discussion Board

All,

Was surprised but pleased to see this article on the lymphatic system in Phoenix Magazine. Some like me have lymphedema which does not only affect ostomotes.

In the last 2-3 years, I went to MANY doctors about puffiness in my right ankle -- and once -- my right leg. Some thought I had a clot. I had a full doplar series of nerve tests. Some thought it was arthritis. Also I had sprained my ankle. The list goes on. FINALLY when everything turned out negative, I was diagnosed with lymphedema. It does not really bother me but my right ankle can swell and be painful. I do need to hydrate more and promised I would when I got an ileostomy last November... I'm supposed to wear medium pressure compression socks. I'm inconsistent with that. They are hard to put on but there is an easier way of putting them on by FOLDING them up.

I also bought this electronic system through Tactile Medical called Flexitouch. https://www.tactilemedical.com/products/ My insurance (not Medicare) paid for it. Costly! It's connected to a monitor and you put on this "spacesuit outfit" with velcro when you have an hour to lie horizontally. I don't know if it helps but the gentle pulsations on my lymphatic system put me to sleep. That was helpful about 6 months after my surgery although I didn't use the part that goes on my abdomen then.

Anyway, it's good to know about your lymphatic system as it's a major system of the body. If you've had cancer, you probably had your lymph nodes removed and tested.

Just a heads up about an article I appreciated. I've been pretty quiet recently. Some doctors thought I had a fistula and it turns out I do NOT. Lots of testing and concern... CT scan, MRI, etc. Nov 1 is my 1-year anniversary for getting my ileo and more -- and having my colostomy and MACE tube removed. Still some challenges... but some overcome.

Happy reading!

Diane C.

The lymphatic system is often forgotten until it's not working properly! It's one of the 3 vessel systems in the body. Everyone knows about arteries and veins, but not many know what the lymphatic system does. I often refer to it as the body's sewer system. It helps to remove all of the junk out of our bodies. The arteries and veins have their contents moved through the body with the assistance of the heart. So when something gets clogged there, it's very evident...and serious. With the lymphatic system, you have to have a manual way to move its contents. This is usually done with muscle movements throughout the body. But, when the lymphatic system becomes compromised (due to numerous different factors) swelling is the most noticeable symptom, and can be problematic as it can swell to the point that it impacts blood flow and nerve impulses to the affected areas. Often times, chemotherapy damages the lymphatic system, leading to lymphedema, but it's not the only cause. There are specialists that deal with lymphedema, and are trained in helping people manage the symptoms/complications. Compression garments are frequently used to keep "garbage" from getting down into the areas that are affected. Retrograde massage, performed by a lymphedema specialist is also an effective treatment.
It looks like the machine you purchased does a little of both, compression and massage. I'm a big believer in "if it works, great, if not, we try something else." Didn't mean to get so long winded about lymphedema...hope I filled in any holes/answered any questions anyone might have had.

David

Hi Diane: Am so very glad to see your post regarding the Phoenix Magazine. Have been a longtime fan since the late 1970's when it was The Ostomy Quarterly (way before your time). I've found it a wonderful way to advocate by passing on my copies to friends who need information, FOWUSA who encloses them within their packages of donation supplies & to members of the medical field who are frequently amazed by the professionalism of presentation & content of high quality articles.

Thanks for taking time to pass the good news along.