Topic: I did everything right...???

Oh Gina,

What a terrible thing to have happened to you.  I hope you are in the BEST medical hands and a speedy recovery is right around the corner.  Praying for you.

Jelly

g, I am SOOO sorry ! I'm going to be praying you heal promptly and well and don't lose the expander. This makes me just sick.

Did this come on really suddenly? Did you have antibiotics on hand or get some quick, or did it take awhile to figure out what was going on? Had you been traveling recently (the last week or so)? How long were you in the hospital? Tell me they didn't put an IV in either arm, yes?

As to how this happened...g, there's such a thing as a spontaneous infection (no skin break, no obvious precipitating event) with lymphedema, but it's more common in women who have never done a therapy intensive or whose LE is out of control (as yours obviously wasn't). All I can say is, keep a careful watch on this after it heals, see if your doc will give you antibiotics to keep on hand, and if it happens again go see an infectious disease specialist. In some cases a long term low-dose antibiotic regimen is advisable for avoiding future bouts of the rotten stuff.

How's the pain level? Please rest up and take good care of you. I feel certain something gooey and chocolatey would improve the situation, and if we lived closer I'd sure as heck bring it over. Do please keep us posted.

Rot!
Binney

My prayers are with you for a speedy recovery. I had a horrific cellulits and an arm that looked liked an elephant a few years ago. I never thought that it would go down but the IV antibotics blasted it!!!

Good luck to you and keep the faith!

LA

Gina,

This makes me angry.  You did nothing out of the ordinary, were bandaged and still got cellulitis.  Being denied what you need to manage your lymphedema (and still be reasonably normal) is really the final straw.  In 2006, after four years of being covered, I was denied coverage of a custom made glove.  I appealed and lost.  (The benefit trust agreed with the provider whose guidelines were written by an orthopedic surgeon!)  The next year, it was covered.  (My garments are covered through a "benefit trust" so my legal rights to appeal are limited.) Be careful--none of the company's "authorized" venders could sell custom gloves so I was also charged with "using an unauthorized provider."  It was a real no-win situation.

Inadequate coverage for lymphedema is a problem with the medical system in the U.S. and won't change until the system changes or we speak out.  Somewhere on the boards, there is some excellent advice from Binney re: drafting a letter appealing insurance coverage.  All I can say is "fight this."  Legislators pass laws mandating treatment for breast cancer and its complications so it is up to us to explain to our elected officials that the insurance providers are not in compliance.  This may mean drafting new regulations to ensure compliance.  Use your anger.  (Though it is damn difficult to type when you are bandaged, you might mention that typing, at least for those of us with hand swelling can be a risky activity.)

Sue

Even the tiniest cut to the skin almost invisible to our eyes such as a rose thorn hit, cat scratch or tiny finger nail cut can result in cellulitis.

An almost invisible tiny finger nail cut from a nurse put my husband in the hospital for a week with severe cellulitis.

It's scary stuff.

Hi everyone,

I just wanted to report I am MUCH better.

The skin is a human color and the redness and pain has really improved. I have a lot of fluid collected under the expander but that will be taken care of next week when I get my exchange done.

Tender and Sahalie, that is something that is so frustrating - a microscopic scratch or in your husband's case Sahalie, a scratch from his nurse?

I do use purell religiously. I keep a big bottle in my car. and I bleached down the whole house this weekend.

I will take your advice Sue and Grace and fight for my sleeves!

BTW-yes they did put the iv in my other arm in the er. Even after I gave them the whole speech. The new one they are countering with is that if they don't add fluids to the drip, then the risk is reduced.  I know. there I am for an infection on the other side and they say fluids from a saline drip will cause LE.

Thanks again for all your help!

love,

g 

G- I'm so sorry you've had these problems.  It makes me so crazy mad when people cannot get the care they need.  I will be thinking about you and hoping that your surgery goes well and that you can rest up and feel like being your own advocate for good care and compression garments.  If I had the cash, I would start a support and advocacy organization for LE patients. 

There is a feature on NBC evening news this week about "mystery" ailments.  I wonder if they will cover LE....?