Lymphedema

dorothymarion

I'm curious to know if any of you suffer from lymphedema.  About six months ago my legs and feet became very swollen, to the point where walking and climbing stairs became almost impossible.   My oncologist referred me to a vascular specialist, who diagnosed it as lymphedema, caused primarily by my cancer.  My lymphnodes are not working properly.  However, after ruling out any blood clots he put me on a course of lymphatic therapy, which included massages three times a week and wrapping my legs in compression bandages.  I did this for six weeks and then moved on to wearing compression stockings.  I wear these now daily, and just wrap my legs each night.  Thankfully, I now have legs that look like legs, with skinny ankles again! 

However, the fluid problems continue, with severe fluid build up in my lungs, to the point where I was going into hospital on a regular basis to have thoracentesis performed on each lung.  The last few visits were only two weeks apart, so my doctors decided that I needed to consider other options, since frequent thoracentesis could lead to permanent lung damage.  My options were a talc pleurodesis, which seals the space between the pleura using sterile talc, or external pleurex catheters inserted into each lung so that draining can be done at home and as needed.  The talc procedure required a longer hospital stay (including 3-5 days in ICU) and some patients have difficulty breathing on their own following surgery.  The external catheters are done under local anethestic with sedation.  I opted for this, as it is not permanent like the talc procedure, and hopefully, (if my fluid problems go away) then the catheters can be removed. 

The catheters are working great for me!  Because of their location however, (located in my back) my husband drains these for my about three times a week.  A visiting nurse came to the house for the first couple of weeks until hubby was comfortable doing the draining and dressing changes.  He's quite the pro at it now, and I feel so much better now that I'm breathing normally again.  I know when I need him to drain off the fluid, and on average we're draining about 500 ccs. from each lung every two days.  It's quick (about 20 minutes for them both), and the relief I get following the drain is immediate. Only drawback is, because of the location of the catheters, I've had difficulty in finding a bra that doesn't restrict the catheters.  A soft cotton sports bra with a racer back is the best I've found so far.  Just wondering if there are any other catheter patients out there who might have a suggestion or two on this problem.

The lymphedema is also affecting my left arm.  Again, no blood clots are present, but I am wrapping the arm with the compression bandages as and when needed.  I've found a great site for a compression sleeve for the arm.  It's called LympheDivas, and the compression sleeves come in various bright designs, instead of the boring beige ones which look like you're wearing a stocking on your arm!!  So there are some benefits to this. 

Dorothy

JulieL

Your lymphedema

So sorry to hear you are having this problem.   Good that the catheters are working tho!  I had pleurodesis done on one lung 18 months ago and thankfully have had no difficulties with it and no further fluid build up.  Only suggestion I can make about the bra is instead to wear a firmish fitting camisole.  Not sure if it would work tho!

 

All the best to you in solving this problem and keeping the fluid at bay!

 

Julie x

seatown

Admire your spirit.

Just wanted to say--so sorry to hear about your lymphedema and fluid buildup problems. I can't offer any advice, but I hope your solutions continue to work for you. I know I could not respond as well as you if I were to have the same issues.