Re: CF Family Education Day at Stanford

March 11, 2001

Becky, my mind wanders a good deal lately; I thought the post was confusing,

and have spoken with the CFRI director about it. I am not yet certain about

whether

I will go, because if my cousin needs me that day (always an iffy thing), I

won't; if

not, I will. I'm easy to spot as I often have to use a wheel chair for

arthritis and other

wise have extremely short slightly graying (aaaaaaaarrrrrrrggggghhhhhh!)

black hair,

dark brown eyes, and oftewn where (gasp!)shorts, but not always. I may see

you

there. Now how will I recognize you?

n Rojas

March 11, 2001

In a message dated 3/11/2001 4:23:18 PM Pacific Standard Time,

Mcesana@... writes:

> Becky, my mind wanders a good deal lately; I thought the post was confusing,

> and have spoken with the CFRI director about it. I am not yet certain

> about

> whether

> I will go, because if my cousin needs me that day (always an iffy thing), I

> won't; if

> not, I will. I'm easy to spot as I often have to use a wheel chair for

> arthritis and other

> wise have extremely short slightly graying (aaaaaaaarrrrrrrggggghhhhhh!)

> black hair,

> dark brown eyes, and oftewn where (gasp!)shorts, but not always. I may see

> you

> there.

I met you last year at the CFRI conference but maybe you don't remember me.

I will definitely remember you and hope to see you there! I am tall (5'10 "

same as you right?) overweight (top heavy) medium length dark blonde hair,

blue eyes, glasses... Ring a bell? Well maybe you will at least recognize

me.

Becky Whicker

beckerbuns@... or letscurecf@...

mom of Ricky (11/26/95) with CF and Andy (3/18/98) no CF

CF Xanga Log: http://www.xanga.com/becky

Shop the web and raise money for CFRI!

http://www.geocities.com/beckerbuns/store.html

March 12, 2001

Becky, I've been thinking of attending this by myself (My daughter doesn't

go to these due to cross infection). I work for the airlines, so it's a day

trip for me from Phoenix. Oh, about the infection guidelines there, I saw

your posting on Cystic-L and I don't care how they responded...no matter

what you do, no matter how clean or how many masks you wear, all these kids

are suseptible to cross-infections and the best place to catch them are in

doctors offices and hospitals because that's where the sick people go. In

my opinion, you have a legitimate concern and there are some REAL issues in

all the CF Clinics. The clinic here in Phoenix was terrible, so I may have

a sour taste in my mouth for them. I just fired a home health care service

because the nurses wouldn't wear gloves or masks, and their response was

" well, we don't have to do that in the hospitals. " My response was, " And

that's why she's not in the hospital. " In my experience, it pays to be

cautious. Not overly paranoid, but very, very cautious. I know you can

catch things all over the place (she went to public schools, too), but my

point is that people go to the doctor or hospitals when they are sick with

an infection. My daughter caught two infections while in the hospital. If

your making a list of attendees, you can put me down on this conference. I

basically want to know the new research and studies out there.

, mom of Shantell 19yr wcf

CF Family Education Day at Stanford

This is coming up on March 31, is anyone planning on attending? n? I

am going to go I think but after blasting it mistakenly on Cystic-L I am not

sure if I'll be welcome. I accused them of not having infection guidelines

and, regrettably, I was wrong... I did retract my statement on C-L. My mind

is somewhere else lately...

Becky

***********************

This is a secular list.

***********************

PLEASE do not post religious emails to the list.

--------------------------------------------------

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

--------------------------------------------------

Our webpage is at http://www.eohio.net/malbright/cfparents.htm

_________________________________________________

Post message: cfparentsegroups

Subscribe: cfparents-subscribeegroups

Unsubscribe: cfparents-unsubscribeegroups

List owner: cfparents-owneregroups

_________________________________________________

WE HAVE A CHAT PAGE!!!

/chat/cfparents

_________________________________________________

March 12, 2001

Oh, come on down, gang, even the " blasters; no one cares or remembers after

y9ou

get there, and if they do, you can always engratiate yourself with the CFRI

executive

director by apologizing--just come on out; it's worth it,

n Rojas (who attends any cf event with accepted CFF guidelines)

March 13, 2001

OK Well I RSVPd n, so you'd better be there.

Becky

March 13, 2001

>OK Well I RSVPd n, so you'd better be there.

What I mean here is that *I* RSVPd, not that I RSVPd for n, in case there

is confusion. (Though you'd better do that yourself, lady!!!)

Becky

March 13, 2001

,

Eilish has just spent two weeks in hsp. and will come home tomorrow sicker

than when she went in. She's picked up something and has been running

fevers for two days. I wish we could have home IV's as she most definetly

picked it up from the hsp.

CF Family Education Day at Stanford

>

> This is coming up on March 31, is anyone planning on attending? n?

I

> am going to go I think but after blasting it mistakenly on Cystic-L I am

not

> sure if I'll be welcome. I accused them of not having infection

guidelines

> and, regrettably, I was wrong... I did retract my statement on C-L. My

mind

> is somewhere else lately...

>

> Becky

>

> ***********************

> This is a secular list.

> ***********************

>

> PLEASE do not post religious emails to the list.

>

> --------------------------------------------------

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> --------------------------------------------------

>

> Our webpage is at http://www.eohio.net/malbright/cfparents.htm

>

> _________________________________________________

> Post message: cfparentsegroups

> Subscribe: cfparents-subscribeegroups

> Unsubscribe: cfparents-unsubscribeegroups

> List owner: cfparents-owneregroups

> _________________________________________________

>

> WE HAVE A CHAT PAGE!!!

> /chat/cfparents

> _________________________________________________

>

March 13, 2001

That's right!

n

March 14, 2001

Hi , just me again, I'm sorry I didn't get to this email first, I'm a

little behind. Why can't you do home IV's? How old is Eilish? Do you

work or a home mommy? I work full time, and still managed to do the home

IV's. If insurance is a problem, most insurance companies like it when you

do home IV's because it's way cheaper than hospitalization. It is kind of

scarey at first, but a good home health company sends qualified nurses to

your home daily until you are confident with what you are doing. They teach

you how to change IV medications etc.. We get the PICC line placed in

radiology in the hospital then we go home. This time, the home health care

company was terrible, and I fired them within 3 days. The nurses wouldn't

wear gloves or masks, they didn't send enough supplies, and their customer

service response was terrible. So, I called my insurance company and went

with Walgreen's Health Initiatives. Where do you live? They have locations

in several states, and they are new here in Arizona. The main address is

520 Lake Cook Road, Ste. 400, Deerfield, Illinois, 60015-5217; Phone:

1-. We absolutely loved them. Excellent quality care, and the

Pharmacy Manager told us about a new IV that was a blessing! I don't know

the spelling of it, but I called him to find out a few minutes ago and will

let you know. But, there are no pumps, no batteries, and the medication is

premeasured (Tobramycin and Ceftazadine) in a small infusion ball (about the

size of a tennis ball). You simply hook it up to the PICC line and it

infuses itself over the appropriate time (half hour for one, one hour for

the other) and then...you throw it away! It is disposable! Shantell loved

it, she is not hooked up to an IV pole, you don't have to drag anything

around, you simply put it in your jacket pocket and that's it. She went to

school with it infusing, then went in the bathroom and threw it away. What

a miracle, and in all the 19 years of dealing with this CF stuff, not one,

and I mean not even one CF doctor mentioned this to us and I heard it is not

a new thing. She will never fight me again on doing IV's with this.

Walgreens told me that usually insurance companies don't cover this infusion

device, so lots of people don't know about it. He also said that patient

satisfaction is their goal, so if our insurance wouldn't cover it, then

Walgreens would. What a relief! I hope she's feeling better today.

, mom of Shantell

Re: CF Family Education Day at Stanford

,

Eilish has just spent two weeks in hsp. and will come home tomorrow sicker

than when she went in. She's picked up something and has been running

fevers for two days. I wish we could have home IV's as she most definetly

picked it up from the hsp.

March 15, 2001

,

Eilish is 3. We cant do home IV's because its run from the hsp. and they

only have one physio. who visits the kids once a day and only does a 30km

radius from the hsp. Unfortunately we live 45km from the hsp. I know I

could do the IV's fine as when she was hooked up in hsp. we used to go for

walks with the pole and if it started beeping I knew how to fix the

problems, just by watching the nurses. I live in Australia, so I dont know

about insurance companies etc. We are not insured at all, all the cf stuff

is free in the public system and the cf clinic is in the public system. The

medications are not free but only cost $3.50 per thing, which is very cheap.

The district nurses said they dont visit cf patient's usually only older

people and sick people. Hello what are cf kids? Hopefully as the home IV's

get more funding they are hoping to expand the distance. Im thinking of

asking if we can still do it at home but maybe every second day take EIlish

into the hsp. for the physio and doctor's to check her, as we drive her home

every afternoon anyway.

Re: CF Family Education Day at Stanford

>

> ,

>

> Eilish has just spent two weeks in hsp. and will come home tomorrow sicker

> than when she went in. She's picked up something and has been running

> fevers for two days. I wish we could have home IV's as she most definetly

> picked it up from the hsp.

>

> ***********************

> This is a secular list.

> ***********************

>

> PLEASE do not post religious emails to the list.

>

> --------------------------------------------------

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> --------------------------------------------------

>

> Our webpage is at http://www.eohio.net/malbright/cfparents.htm

>

> _________________________________________________

> Post message: cfparentsegroups

> Subscribe: cfparents-subscribeegroups

> Unsubscribe: cfparents-unsubscribeegroups

> List owner: cfparents-owneregroups

> _________________________________________________

>

> WE HAVE A CHAT PAGE!!!

> /chat/cfparents

> _________________________________________________

>

March 16, 2001

Hi , well that explains a lot. I'm sure it is very different in

Australia. It's really nice to talk to people on all ends of the earth who

are dealing with the same problems. I had a very close friend who worked

for us in Alaska who was from New Zealand, so I do know a lot about your

health care system (she was a nurse). I know you have limitations on what

you are able to do, but it is a big bonus that it is so cheap. I didn't

realize Eilish was so young either. But at any age, it's so hard

emotionally to have them in other surroundings like the hospitals. Even

when Shantell was 16yr for her first hospital visit, I spent the nights with

her and slept in the chair. Once, after sinus surgery she was on strong

pain medication in her room and all of a sudden she stood up on the bed!

Fortunately, I was sleeping next to her and heard her get up, she didn't

even realize where she was or what she was doing. I hope they can let you

do home IV's soon, it will make all the difference in the world for you. I

think you should at least ask! The IV (no pole, no pump!) is called

Elastoremic Infusion Device, maybe you can see one on the internet

somewhere, although I'm not the greatest in finding where! The travelling

distance must be very hard on you! Australia must be beautiful, though.

That is one place Shantell has always wanted to journey to. We talk about

going every year because I work for an airline and airfare is free. Maybe

this year. I hope Eilish is feeling better today, my heart goes out to her

and all of you. I know how that weighs on you when children are sick. My

life stops, basically, and my days are filled with caring for her every

need. Keep us posted.