Arm amputation for LE

The only time I could envisage that happening would be if the subject developed a rip-roaring, life threatening infection, such as necrotising fasciitis, which would require immediate amputation, or presumably had such severe frequent infections that her arm was essentially a threat to her life at worst, or a severe inconvenience at best!

I would think the chances of that happening, especially if you are watchful and get any infections treated swiftly, are EXTREMELY small, and really not something to stress about.

I did have one infection in my arm, which might have been initiated by bug bites. My arm swelled significantly, with some red streaks, and it kicked off my lymphedema diagnosis, but responded quickly to oral antibiotics and a course of wrapping. I now only wear my sleeve intermittently, although I have met one person who has had several hospital admissions for acute infections. She is a keen dragon boat racer, like me!

I agree with AmyQ ...... I personally would not read that book!!!

(Edited to remove insensitive phrase)

wow, that is scary,, but I would think that would be extremely rare.   Not reading that book either.

That is very scarey about the lymphoedema ..!!

CAMommy.. That is so inspiring to hear about your Mum.. Did she know any of her stats at the time..??

I just got that book from kindle unlimited. I had to know what happened to her.

"Chopping off her arm" ....really???? How insensitive can you people be?

I want to thank Colleen for putting her story out there. The Amazon reviews were almost all positive (from non-LE people!) and I think that, as an oncology nurse, she certainly was aware of the risks of continued infection.

The book apparently came out originally as an electronic edition which I mentioned to my husband, our family Kindle holder, and we may download it for vacation reading soon. Her long term survival after such a young diagnosis is worth celebrating. I'm also reminded of our many military veterans who have lost limbs.

Let's not deny the real possibility of lymphedema's potentially severe consequences which might induce us to recoil from obviously difficult circumstances but instead recognize the personal strength/determination required to move forward and live well despite those issues.

I was going to post approximately what AmyQ said above.

Apologies Colleen that you found our posts hurtful and insensitive. I for one was not mindful of the fact that you would likely be reading this.

I'm really sorry such a terrible thing happened to you, but as has been said, the gist of all our comments was that there is no reason for people to go into a fear frenzy over something that is frankly an extreme complication of something many people only suffer in a relatively mild form.

I wish you well.

Colleen, welcome to bc.org. I certainly hope you recover from your upset over the comments here. I too am sorry you've taken such offense, though I'm certainly not sorry the women here posted their honest reactions to this disturbing story.

It's the privilege of any author to derive new insight from the responses of her readers. Most of your on-line reviews are certainly positive (yes!), though personal experience with lymphedema does seem to inspire a different response. At any rate, this is certainly not the Amazon book review page—it's a support discussion board where, as you can see, we all feel entirely comfortable expressing our fears, our revulsion over this chronic and threatening condition we're dealing with, and our support and encouragement for one another--including you!

You might consider patting yourself on the back for having struck such a personal well of feeling among your readers and would-be readers here, even if you consider them to have "missed the point." Every book is personal, and the mark of its success is that every reader is able to take it personally. As authors, once we release our "baby" into the world we do relinquish control over the "point" our readers take from it.

Ladies, we've all been following this thread, feeling the threat of what seems like a new revelation of the issues involved in dealing with LE. But do remember that none of this is news—it's the reason we all know to take IMMEDIATE action at the first sign of infection. Maybe this is a good time to review the information on dealing with LE emergencies:

http://www.stepup-speakout.org/Emergencies_and_Med...

Onward!
Binney

Kicks, 35 years ago the LE care we have today did not exist in this country, so it's entirely possible Marina's aunt lost the use of her arm. It's amazing the advances in LE care in just the past decade! Anyone interested in learning more about the current advances in the field is invited to attend the Patient Summit at the World Congress of Lymphology in San Francisco this coming September, which attracts researchers and other LE professionals from around the world. Information here:

http://www.lymphology2015.com/program/patient_summ...

Several of the gals here will be attending, and I'm really looking forward to their reports!

Hugs,
Binney

Colleenmck, it's actually really nice and interesting to meet you. Thanks for stopping by. And we hope you stick around.

Sorry if the posts offended you, it is easy to forget that authors are people with feelings.

Don't be a stranger!

I am reading Colleens' book, and enjoying it very much. She is a good writer, and i feel as if i am getting to know her. It is much better written than the majority of books I have read of women's lives. I am glad to be reading it.

Once, when my LE therapist wrapped my arm on a tuesday, she asked me to keep it wrapped until the next time I saw her, which was the next monday. Six days. So, when she unwrapped it, she washed her hands, and lotioned my arm, and proceeded with the manual lymphatic drainage. So, when she was done, she told me, i don't want to alarm you, but you have a red spot near your elbow on your forearm. and proceeded to draw around it with a blue pen. Then she sent me over to urgent care. This was summer and hot, and if you have LE, I am sure you know just how miserable multi layered bandaging can be then. They gave me a double dose of oral anti biotic, and then a script for more. The red spot went away by next morning. But the damage had been done. I was pissed. Because my LE'ist had loaned me her textbook, Foldi's lymphatic system one, just a couple weeks before, because she said no one else she sees was interested in learning more about it. And in that book, it clearly states that if cellulitis is suspected, immediately stop MLD. And she didn't. At a nationally recognized TX place. Yeah. And the week before that, i had been reading a book by an infectious disease doctor, who said that cellulitis should only be established by a doc like him, I don't know if that part is true, but I do believe you aren't supposed to keep going with MLD. But when I got really angry was when I read the L'ist's notes from that day. She stayed that i had kept the bandages on for far too long. What! I wanted to rip them off the day after she put them on, but i tried to do what she asked me by leaving them on until the next visit. it really undercut my trust in her, and I have never told her about it. I just let her do my arm. I don't talk to her like I used to. And so even tho I don't think that I really had cellulitis, it is on my health record. That is just wrong to me.

Especially after the fact that every time I tried to tell all my doctors and nurses about the swelling in my arm, and the acheyness of it, they ALL said, "oh, that's not too bad!". Until it was, and my arm will never be the right size, ever, because they didn't refer me until way too late.

The reason i read the textbook is because I wanted to know my enemy, and it's why I read Binneys' threads, and why I have referred many times to step up speak out.

I hope Colleen sticks around too, and that we can all be friends. The reactions of each, are just that: reactions. It's okay.

Well said, BarredOwl ! Why are you barred , by the way? Curious.

Barrd owl is a a particular owl that is in some aces