Wednesday, August 5, 2009

Lymphedema Update

Yesterday I had my physiotherapy appointment for lymphedema in my right arm. The first thing the physiotherapist asked me, when I had my surgery, when I first noticed swelling in my arm and if I had ever had any infection in my right arm or right chest area. I said yes in fact I have ... back in April of this year, my CVC (central line catheter) did get infected. I whipped down my collar and showed her my CVC hole ... she said, “Oh, that isn’t healing is it?” and I said, “No.” So that is what likely sparked the lymphedema.

The next thing the physiotherapist did is measure the circumference of my left arm starting at the hand and ending at the elbow ... in two inch increments. She then did the same for the right arm but she measured the circumference all the way to my arm pit. She couldn’t do this with my left arm because I have a PICC line in the way. She then took these numbers and inputted them into a computer program that spit out some info. The measurements gave a total volume for the right arm which included everything from the hand to the armpit and secondly, it compared numbers for the two arms. Because I’m right handed, it is considered my preferred arm and should be three to four per cent larger than my left. What we found is that it is ten per cent larger which indicated edema.

Anyways, I walked out with a temporary compression sleeve and a half mitt and written instructions on how to maintain the sleeve and how to look after my arm. One of the things I did learn is that my arm is now prone to infection. Something as simple as an insect bit or scratch could become an issue.

My next appointment is in a month at which point we will re-evaluate the situation. I will turn in the temporary sleeve and mitt and purchase one of my own ... assuming this combination works out well. With the half mitt there is a chance that fluid will be pushed into the fingers. Should that become an problem we will turn to a glove where the fingers are all cut off.

13 comments:

Joanie M said...

Good luck with that! Doesn't sound like much fun.

Anonymous said...

Hey Daria!

I love your blog!! Thanks for sharing your experiences and all the terrific info on fighting cancer. God is so much bigger than cancer! I'll be praying for you! Love from a sister survivor,

Kerry Osborne
www.kerryosborne.blogspot.com

Beth said...

Wow, all good info to learn. It's interesting they can measure the volume like that! And the sleeve doesn't really look that bad, I think you should get it in your favorite color (probably not pink)...

Denise said...

Well bless your heart! I am always praying for all you ladies that are warriors in this battle.....God sees you! HE does!

Ann said...

I love the idea of a customized sleeve. I think you could get really creative with it. I hope you're getting some relief and it resolves soon. Sending some long distance good vibes from the super muggy south.

Peggy said...

You are like the energizer bunny, you keep on getting up and moving forward!

Alli said...

Daria physio will help make the difference. I have my sleeve on order and yes you can custom colour co-ordinate them but that of course is extra. The objective is to release the swelling. they do this lovely light touch therapy that really feels like it is working. I see that my hand is not as swollen as it was. My wrist and hand was so puffy you could see every line that was a scar stand out..
good luck with the therapy Daria....

alli xx

Roxanne said...

Hi Daria,
Did they say that your lymphadema was caused by the infection? Did it happen just recently or have you had it for awhile. I have read so much about it and wondered if there was a way to help prevent it. Hope that sleeve doesn't get too hot for you.

nollyposh said...

Hugz and Love to you huNNy xox

Michelle said...

Mum had to have an ultrasound today due to swelling in her leg, they thought it may be a clot, turns out it's this too....

Is a another pain in the backside she doesn't need I guess

xxx

Denise said...

I had a pic line! I could not wait to get it out. Part of it was in my head....grossed me out! LOL.

Daria said...

Roxanne,

It sounds like the infection from my central line catheter may have caused the lymphedema. The infection happened in April of this year.

Thanks,
Daria

Kara Herron said...

Daria -
I've got Lymphodema as well. I'm glad you were able to borrow a sleeve - I had to purchase one and when I got it, we could hardly get it on. Seriously! Then, after about 20 minutes, my hand had doubled in size. So, I stopped using the stupid sleeve. I ordered another one that goes all the way down onto my hand, in a BIGGER size, and just got it in the mail. I'm going to try it today. It's my left arm and there wasn't a problem after the mastectomy - just after my reconstructive surgery. It's annoying - I can't wear my wedding ring. I feel weird without it. I'm sad because my hands are about the only really skinny part of my body, and now my left hand isn't skinny anymore. (!) I'd love to know if your sleeve works. If mine doesn't, the next step is to go to a therapist. Good luck!
-Kara