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Re: Digest Number 791

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Hi Crystal

Some of your daughter's symptoms sound like a severe iron deficiency. Have

you had her tested for anemia? A ferritin blood test would confirm a low

iron level.

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  • 9 months later...

Just wanted to let everyone know . . . I'm having computer problems and will

probably not be online for awhile. It may be after Christmas before I'm back on

again. I'll miss you all.

Keep breathing!

Melinda

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  • 1 year later...

-

Some more thoughts on benefits of an " on-line " support group such as the

zapper ...

* -- You can log on any time of the day or night with a question, concern

etc. -- and often receive very quick replies - rather than saving your

questions for a group that only meets once a month or something.

* -- You can interact with a broader base of people with varied life

experiences -- I'm only 36 and lots of the people on the zapper site are

young, but in my area, most of the people attending the support groups are

significantly older than I am and their life situations/struggles etc. are

sometimes different -- here, there's always usually someone who's been there

before.

* -- There's a wealth of information in the messages, bulletin boards etc.

that you can search through -- often, the topic has come up before.

* -- If you go through a busy stage in your life, you can still keep up with

current information by simply reading the messages, posts etc. -- e-mail is

great because you can sift through it at your leisure -- it doesn't require

a specific commitment to a block of time.

*--People in the same geographical location often use the same EP, hence,

the same opinions from a medical standpoint -- here, people can provide LOTS

of info. from all over and most have different EP's. Sometimes one EP has

delved into a specific issue a little more than another and you can pass

information along.

*--You can find out about conferences etc. that are offered nationally such

as the Young ICD conference etc.

*-- The people are AMAZING! When I was in the hospital for open heart

surgery, a huge source of encouragement was that my husband printed out the

encouraging e-mails from people on this site each day and brought them in to

me at the hospital -- people that had never even personally met me were

thinking of me, praying for me etc. -- what an encouragement.

*--You can learn to laugh again, despite the life changes that come with an

ICD and as you interact with others, you realize you are not alone and how

precious life truly is.

Hope that helps -- feel free to e-mail me with any other questions that I

could help with -- jdivine@...

Sincerely,

ita in Ohio

age 36

ICD implanted March 2002

>

> Message: 5

> Date: Tue, 12 Nov 2002 13:15:10 -0000

> From: " " <rpknfn14@...>

> Subject: Project

>

> Hello Everyone,

> My name is Pierce and I am doing a project on ICD support

> groups for a technology and communications class in college. Any

> information that anyone could pass along would be greatly

> appreciated. Please send to rpknfn14@... thanks again

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Chris: I agree with ita's comments, many of which I had never

considered before she raised them. This group provides a source of

information as well as a friendly, pressure-free (usually)

environment to ask the questions that you might be embarrassed to ask

your doctor in person. The social aspect is also appealing to many

people. Very few of us have ever met others on the list in person

but we have grown closer just by sharing our stories and concerns.

Like ita, I am young (okay, not so young, I'm 44) and most of the

people who have been implanted at my hospital are 60 or older. On

this list, we have everyone from teenagers to 70+.

Good luck with the project. The more that people learn about ICDs,

the less strange they become and by extension, the less " different "

are the people who have them. I also have just started keeping in

touch with a group of people that I met at the Young ICD conference

that was held on October 5 in Ypsilanti, MI. The internet provides a

quick way to stay in touch and also to search for answers to

questions as they arise.

Implanted June, 2000

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  • 9 months later...

Dear ,

I am not fused as extensively as you, however, I have always had a bit of

trouble, & now a LOT of trouble " twisting " to look behind me. Have you tried

practicing sort of pushing with your right HEEL (not on the accelerator) & sort

of pivoting on your bottom so that you can look behind you? If you can get

yourself turned just far enough, you should be able to see what you need to in

the outer limits of your peripheral vision. While I would NOT recommend driving

like this all the time, perhaps you could pull it off long enough to pass

your driving test.

If not, there MUST surely be some way for you to get around it. I know there

has to be because I worked in a rehab hospital, & several of the quads drove

all over the place. I know some already had their license before they got

hurt, but some of these guys were really young. They did have a driver's ed

program at this hospital. So, perhaps you could check with your state

vocational

rehab program if you can't manage to " scoot " around far enough in your seat.

I don't know if all state voc. rehab programs have driver's ed, but it would

be worth a shot to ask.

With Blessings & Love,

Carla Kay

~ Ps. 96:1 O come let us sing unto the Lord: let us make a joyful noise to

the rock of our salvation.

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  • 4 months later...

RE; Luca and his CT

I was referring to the mastoid bone where the internal magnet is placed,

sorry for the confusion.

Mom of Sydney

N24 1997

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  • 10 months later...

>>I was worried

I don't think I'm forgetting things more. I DID go to an appt. last

Wednesday and they told me it had been TUESDAY. I can make mistakes but

I think it was the lady there....and as I was leaving for my

non-appointment, a worker there said she'd see me tomorrow...and I said

FRIDAY? She said, " I WISH tomorrow was Friday. " So that was one slip-up

there.

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