Abdominal lymphedema

[donsuzbee]

Pat,
I wrote a year ago about having a right nephrectomy. adrenalectomy and lymph glands in that area removed for biopsy purposes. And you probably remember me due to all my whining about full blown upper right quadrant -back & front-lymphedema from BC x 2 plus full radiation.
Can you explain what it would be like if this darn LD is now lower than my right side waist where is stopped prior to the neph?
God bless!
Susan B

[patoco]

Hey Susan

So good to hear from you

This all over lymph is jsut about the most miserable experience I've ever had.

My concern is what happens when LE goes into the chest and abdomen..as it can reakky change the entire physiology of your lymphatic system and body.

It really in a major way makes me sad to share this, because it is difficult, but you do ened to know.

As lymphedema gets into the upper body and abdomen, it will cause the lymph vessels to dilate. When it dilate, the lymphedema is made much much worse because the valves in the formerly good part of the lymph system are no longer able to close to prevent "backflow" of lymphedema. It starts a viscous cycle.

More swelling creates more dilation which creates more swelling.

Plus, in the abdomen, when this happens, the intestinal lymphatics begin to be unable to process proteins and fats. You will begin to experience protein loss. Again, part of the cycle. Low protein levels lead to more swelling...which furthers the cycle.

Also, because you have problems procedssing the fats, you may become more sensitive to "fat" in foods.

As the abdomen fills, it begins to crowd and press the other organs. Eventually, it seeks to move somewhere and can begin to move directly into the pleural cavity. Eventually also, there may be permanent damage to the thoracic duct.

The thoracic duct is the very central locations where almost all lymph is dumped back into the venous system to be eventually removed by the kidneys.

This entire system can break down...and this is exactly what has happened to me.

Treatment - trust me on this one, all the mld, self MLD, exercises (breathing ones too) may not be able to help. Eventually, it stopped helping me. That is why a year and a half ago I exploded with 65 lbs of fluid in my abdomen and why eventually, I was having more then two quarts taken out of each lung every three weeks.

I am having to go outside the norm to stay alive and keep going. I'm on demadex twice daily. Yes, diuretics should not be used generally for lymphedema. If a reader reads this, please understand this. Do not let your doc simply put you on diuretics for LE. But, there are sometimes when life preservation may indicate a need for it.

Also, even the diuretics were not able to keep the fluid under control. That is why I had to have a pleurx catheter put into each lung. Every three days now, at home, I can drain a pint off each lung. This has made a big difference and actually has help remove about 25 pounds of fluid from the abdomen as well.

Sometimes, if there is an unusually large amount of fluid in the ab, you can drain it, much like you do the lungs. However, the fluid has to be in a "pocket." Since a lymphers fluid is spread throughout the interstitial tissue level, this wasn't possible for me and probably wouldn't be possible to anyone else with lymph.

With minor abdominal LE, sometimes these biker shorts cn help. Again, it would depend on the over all condition of the lymph system and the amount of fluid retention.

When the abdomen/chest becomes full of fluid, it becomes rock hard. Even the most simple things like wrappnig, putting on shoes, picking up something becomes a major major difficulty.

I have the most wonderful oncologist and a super terrific lung (thoracic) surgeon who has helped on this. There are very very few thoracic surgeons that have experience with the Pleurx as it is new (only one or two in all of Gwinnett county)... If you need any info on this or the docs, you can always write me off list - lymphedemapeople@aol.com. I'm always here for you. Now at least we have one that has experience with both the pleurx and LE (trained 'em I hope )

Don't know if this answered your question, if not, please don't hesitate to let me know.

You're in my thoughts and very much in my prayers

Pat

[Storytree1]

I started with Stage 2 uterine cancer and a complete hysterectomy. Then got MRSA in the wound and abdominal lymphedema. After my hysterectomy, I gained 65lbs of fluid. Then I had five weeks of radiation therapy, which made the lymphedema worse. I had viral pericarditis which left me with a weak heart. So every time I tried compression, I got Congestive Heart Failure. Then they tried Metolazone added to the 80 MG of Lasix I take twice a day. It worked and I lost almost 100lbs. But when I had my next heart scan, they found there was so much fluid, my heart had changed position! Then the cancer returned and more surgery. The lymphedema was so severe, I was literally flooding fluid. They tried a drain, then a wound vac, but both were over whelmed. I was leaking a quart of fluid a day. Now my wound is healed, I am facing 5 weeks of targeted radiation. Not good for lymphedema. I have regained 20 lbs and my abdomen is swollen. Metolazone has had limited success. I cannot use compression because of my heart. I am scared this will eventually do me in before the cancer. No one seems to have a solution. So far, my lungs are clear, thanks to the Vancomyacin. Please let me know if you have any ideas. Thanks, Ada

[patoco]

Hi Ada!!!

To you a very special welcome to our family here. First, my grandmother was named Ada - and - she had hereditary lymphedema. But, even more important is what a nightmare you have been through. While my abdominal and lung fluid was caused by the chemo, my cancer was b-cell lymphoma. We even seem to have on the same amount and type of diuretics ditto for wearing the compresion garments too.

I shared a lot earlier on what my experience with this has been like and I am so grateful for you to share yours as well. This seems to be a larger problem then our lymphedema specialists reliaze and it becomes imperative that some other solution needs to be found other then massive diuretics and tubes sticking out of us everywhere. This thing about telling us they have no answer really gets old after a while.

My heart and prayers are with you about this upcoming radiation. When my lymphoma first showed up in 1995 they did radiation - and after seeing what it did to the leg tissue have ruled it out in the future.

Pat

[Storytree1]

Dear Pat,

My Great Grandmother was Ada and we were born on the same day. My daughter is also an Ada.

So far, the cancer I have, adenocarcinoma, is limited to my right groin. It has not spread. I plan to have another cat scan as soon as the radiation effects fade. I know what you mean about no answers. I did get relief from the Metolazone once my radiation was complete. I lost 100lbs. of fluid. I hope this happens this time. It is nice to know I am not alone. My email address is: Storytree1@aol.com. Fell free to email me any info you get. I will check back here as often as I can. Take care and good luck. Ada