Back home and thanks

January 23, 2010

Hi Everybody,

First I would like to say thanks for our moderators for taking care of

things while I was gone. is fighting for her life in the hospital,

she has a huge infection in her leg and is fighting cancer. Please keep her

in your thoughts and prayers.

Joanna was admitted to a hospital in Atlanta. Joanna has EDS and has a

horrible time with healing. She also found out this year that she doesn't

have any autoimmune system, so fighting infection is extremely difficult.

Her fusion incision opened up after surgery, but it has totally opened now

and her body couldn't fight an infection any longer. Her icp is extremely

high, so her infectious disease, plastic surgeon, are trying to calm things

down, hoping the infection doesn't spread to the hardware. Again, I ask for

thoughts and prayers.

All of CCI's moderators deal with daily symptoms and pain, they do this

because they want to help you. I could tell you the other moderators

problems right now, but Joanna and really need your prayers.

On the home front, I noticed my breast started to " bruise " again early last

week and started to apply heat. I bruise very easy. By Wednesday night, I

contacted Dr.B saying it was red instead of bruise, he ordered lots of

tests, and I saw my primary on Thursday. She said, go home, pack your bag,

and be ready to leave. Dr. B let me stay home that night, but I was admitted

Thursday through the ER.

I had the shunt removed from the neck down on Thursday. Infection came back

as a standard staph infection. Dr. B said the majority of the infection was

in the breast when he removed it. I had an old pocket of mastitis from

nursing 22 years ago. For those that know me, don't laugh to hard, if it

will happen, it will happen to me! LOL The infection had spread to the CSF,

and had to be removed completely on Monday.

We are home with my fanny pack for antibiotics. It's a great invention. I

feed the bag once a day, it's set up on a timer that administers the

antibiotics, then gives a slow drip to keep my PICC line open. I thought I'd

have to come home and feed my IV every 4 hours, I love it. However, it would

have been ironic if this all started with feeding a baby every 3-4 hours,

ending with feeding an IV every 4 hours. LOL

Sorry this was so long, but I had lots to say for once.

Kathleen

Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed

with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome,

surgery for everything but EDS since 1998.

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