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Beth

I think my biggest gripe on waiting is when they do decide she needs to be

admitted. some times it's 6 to 7 hours before she gets relief of any kind. 1st

we go through the BS at the Dr office where they draw blood and wait for labs.

Cassie is a very hard hit for IV and blood work so sometimes its 45 minutes

just trying to get they blood to test. Then we wait for tests. They decide

to admit her so on to regwstration thats usually not to bad 20 minutes till

she's in a room. Then her nurse comes in 1st thing every time i sugest they put

emla on her to start numbing up possible IV sites. But no the Dr may not

want to do thatso the nurse goes threw her whole admit paperwork, next come the

ward Dr. So now we go threw a complete 35 to 40 minutes of health history,

tests that have been done etc.. " What about the emla guys? " No no where not

sure

what her problem is more questions still nothing for pain , nausea or any

fluids yet. Fianlly we get down to what did they do last time so I tell them,

Well we just get this started we will write the orders and let the nurse know.

30 minutes later nurse finally comes in with emla then it's another hour till

they can even attempt to stick her. Then we usually got threw several nurses

before they can find one who can get an IV in her. That is the worst waiting

we go threw. But I hate it so much so does Cassie. Then to top it all off,

once her DR see's her on the ward he ussually changes all her med orders anyway

so it was all a big waste of time.

Except for the Heriditary testing we have had done, all Cassie's tests come

back normal unless she is in a full blown life threatening attack then her

enzymes elevate . That's why its idiopathic. That's the part I wish I could

get

threw threir heads, sh'es idiopathic.

Patty Hurst

Bangor, ME

Maine State Rep

PAI

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  • 2 years later...

Hi my name is Danny, I just what'd introduce myself, I'm a new member

and I've completed my two appointments. Now I'm just waiting for my

Doctor to come back for golf coast were is has volunteer his services

helping the people over there. Are there any support groups in San

or in Santa Clara that I can attend.

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Welcome, Danny. There are some support groups down there...Eleanor, you are living down there now...have you found some good groups that you can point Danny to attend?

Robynndaniela2estr wrote:

Hi my name is Danny, I just what'd introduce myself, I'm a new member and I've completed my two appointments. Now I'm just waiting for my Doctor to come back for golf coast were is has volunteer his services helping the people over there. Are there any support groups in San or in Santa Clara that I can attend.

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Welcome Danny,

Click on the calendar (to the left) and you will see the meeting

schedule. There is one at the Santa Clara Kaiser(on the seventh ?).

Also, check out the " Files " section for other useful information.

And ask ANY question you want. We try to help out as much as we can,

and offer a shoulder as well if needed. There are people here from

all ranges of experiences...

> Hi my name is Danny, I just what'd introduce myself, I'm a new

member

> and I've completed my two appointments. Now I'm just waiting for my

> Doctor to come back for golf coast were is has volunteer his

services

> helping the people over there. Are there any support groups in San

> or in Santa Clara that I can attend.

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Hi Danny,

Welcome!

There is one at the Santa Clara Kaiser the first Wednesday of each month. I will be going for my first time in October since I was not able to attend last months meeting.

Smiles,

Maridiana

daniela2estr wrote:

Hi my name is Danny, I just what'd introduce myself, I'm a new member and I've completed my two appointments. Now I'm just waiting for my Doctor to come back for golf coast were is has volunteer his services helping the people over there. Are there any support groups in San or in Santa Clara that I can attend. ~~~~~~~~~~~~~~~~~~Maridiana Saucedo Goddess (hehehe) (Cell) maridianas@... ~~~~~~~~~~~~~~~~~~

Happiness keeps You Sweet, Trials keep You Strong, Sorrows keep You Human,Failures keeps You Humble, Success keeps You Glowing, But Only God keeps You Going!__________________________________________________

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Welcome Danny, im also new, and will have my surgery in 5 days on 9/27. This group is the best thing Ive found so good luck and happy wishes..daniela2estr wrote:

Hi my name is Danny, I just what'd introduce myself, I'm a new member and I've completed my two appointments. Now I'm just waiting for my Doctor to come back for golf coast were is has volunteer his services helping the people over there. Are there any support groups in San or in Santa Clara that I can attend. Ciao,

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