gday from australia

K

kylesammy

New member
myself and my fiance are raising my fiances 3 year old sister who has cf. her mother, who was a single mother lost a courageous 12 month battle with bowel cancer 4 months ago and jordana has been living with us since. in that time she has had one 2 week tune up and goes in for a bronchoscopy and week long tune up on thursday.
been a bit of a reality check on how much hard work living with cf can be. cant believe her mother did it whilst battling cancer. so basically i am interested in finding out about different forms of treatment from what we use in australia. one thing has really got my attention is the VEST. would love to hear feedback on this as any questions to doctors/physio about the VEST is met with trepidation or perhaps a lack of knowledge.

Looking forward to your replies
Kyle
 
K

kylesammy

New member
myself and my fiance are raising my fiances 3 year old sister who has cf. her mother, who was a single mother lost a courageous 12 month battle with bowel cancer 4 months ago and jordana has been living with us since. in that time she has had one 2 week tune up and goes in for a bronchoscopy and week long tune up on thursday.
been a bit of a reality check on how much hard work living with cf can be. cant believe her mother did it whilst battling cancer. so basically i am interested in finding out about different forms of treatment from what we use in australia. one thing has really got my attention is the VEST. would love to hear feedback on this as any questions to doctors/physio about the VEST is met with trepidation or perhaps a lack of knowledge.

Looking forward to your replies
Kyle
 
K

kylesammy

New member
myself and my fiance are raising my fiances 3 year old sister who has cf. her mother, who was a single mother lost a courageous 12 month battle with bowel cancer 4 months ago and jordana has been living with us since. in that time she has had one 2 week tune up and goes in for a bronchoscopy and week long tune up on thursday.
been a bit of a reality check on how much hard work living with cf can be. cant believe her mother did it whilst battling cancer. so basically i am interested in finding out about different forms of treatment from what we use in australia. one thing has really got my attention is the VEST. would love to hear feedback on this as any questions to doctors/physio about the VEST is met with trepidation or perhaps a lack of knowledge.

Looking forward to your replies
Kyle
 
W

welshgirl

New member
kyle welcome<img src="">. well done to the both of you. bless her!!! i hope you get all the information you need.


the vest seems to be mainly used in the states. i have been told the australian health authority are waiting for the vest to be approved. don't hold me to that though!!!!
 
W

welshgirl

New member
kyle welcome<img src="">. well done to the both of you. bless her!!! i hope you get all the information you need.


the vest seems to be mainly used in the states. i have been told the australian health authority are waiting for the vest to be approved. don't hold me to that though!!!!
 
W

welshgirl

New member
kyle welcome<img src="">. well done to the both of you. bless her!!! i hope you get all the information you need.


the vest seems to be mainly used in the states. i have been told the australian health authority are waiting for the vest to be approved. don't hold me to that though!!!!
 
M

mum2kj

New member
Hi Kyle,
I'm from Aussie land too<img src="">

welcome to the site.

The vest is now registered in Australia because i have just received an information pack from hills rom.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.thevest.com/
">http://www.thevest.com/
</a>
the cost is huge though around $13,000.00 or more ( we definitely won't be using one now) I don't even have a car and i could get one at that cost lol.

My daughter uses the flutter and has done since the age of 6. it works really good as it vibrates the lungs from the inside.
 
M

mum2kj

New member
Hi Kyle,
I'm from Aussie land too<img src="">

welcome to the site.

The vest is now registered in Australia because i have just received an information pack from hills rom.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.thevest.com/
">http://www.thevest.com/
</a>
the cost is huge though around $13,000.00 or more ( we definitely won't be using one now) I don't even have a car and i could get one at that cost lol.

My daughter uses the flutter and has done since the age of 6. it works really good as it vibrates the lungs from the inside.
 
M

mum2kj

New member
Hi Kyle,
I'm from Aussie land too<img src="">

welcome to the site.

The vest is now registered in Australia because i have just received an information pack from hills rom.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.thevest.com/
">http://www.thevest.com/
</a>
the cost is huge though around $13,000.00 or more ( we definitely won't be using one now) I don't even have a car and i could get one at that cost lol.

My daughter uses the flutter and has done since the age of 6. it works really good as it vibrates the lungs from the inside.
 
K

kybert

New member
mum2kj, did hillrom say whether private insurance is going to cover some of the cost? or have they not talked with insurance companies yet?

when my parents sell this house i might bug them to get me on regardless of whether we get any money back or not. im so sick of them protesting when i ask them to do percussion on me, then i get the blame if no physio is done.
 
K

kybert

New member
mum2kj, did hillrom say whether private insurance is going to cover some of the cost? or have they not talked with insurance companies yet?

when my parents sell this house i might bug them to get me on regardless of whether we get any money back or not. im so sick of them protesting when i ask them to do percussion on me, then i get the blame if no physio is done.
 
K

kybert

New member
mum2kj, did hillrom say whether private insurance is going to cover some of the cost? or have they not talked with insurance companies yet?

when my parents sell this house i might bug them to get me on regardless of whether we get any money back or not. im so sick of them protesting when i ask them to do percussion on me, then i get the blame if no physio is done.
 
D

ddawes27

Guest
HI,
My son was diagnosed last week at 5 yrs old. I have read various articles that said that Hill-Rom is the only effective vest company. Luckily, my Md ordered it from Hill Rom. Their web site is at <a target=_blank class=ftalternatingbarlinklarge href="http://www.hill-rom.com/usa/index.asp
">http://www.hill-rom.com/usa/index.asp
</a>The American toll-free number is 1-877-458-4844.
They called me yesterday for measurements of my son. Today a Respiratory therapist called and stated it will be here tommorrow. I work with a woman who also has a child with CF (25 yrs old) She says that everything changed when they started using it.
The Vest is expensive, they informed me that it had a lifetime service contract. They will replace a broken machine, and also send vests as my son grows out of them, free of charge. They ship by Fed-Ex so it has to be an option for people in Australia. I hope this helps.
DD
 
D

ddawes27

Guest
HI,
My son was diagnosed last week at 5 yrs old. I have read various articles that said that Hill-Rom is the only effective vest company. Luckily, my Md ordered it from Hill Rom. Their web site is at <a target=_blank class=ftalternatingbarlinklarge href="http://www.hill-rom.com/usa/index.asp
">http://www.hill-rom.com/usa/index.asp
</a>The American toll-free number is 1-877-458-4844.
They called me yesterday for measurements of my son. Today a Respiratory therapist called and stated it will be here tommorrow. I work with a woman who also has a child with CF (25 yrs old) She says that everything changed when they started using it.
The Vest is expensive, they informed me that it had a lifetime service contract. They will replace a broken machine, and also send vests as my son grows out of them, free of charge. They ship by Fed-Ex so it has to be an option for people in Australia. I hope this helps.
DD
 
D

ddawes27

Guest
HI,
My son was diagnosed last week at 5 yrs old. I have read various articles that said that Hill-Rom is the only effective vest company. Luckily, my Md ordered it from Hill Rom. Their web site is at <a target=_blank class=ftalternatingbarlinklarge href="http://www.hill-rom.com/usa/index.asp
">http://www.hill-rom.com/usa/index.asp
</a>The American toll-free number is 1-877-458-4844.
They called me yesterday for measurements of my son. Today a Respiratory therapist called and stated it will be here tommorrow. I work with a woman who also has a child with CF (25 yrs old) She says that everything changed when they started using it.
The Vest is expensive, they informed me that it had a lifetime service contract. They will replace a broken machine, and also send vests as my son grows out of them, free of charge. They ship by Fed-Ex so it has to be an option for people in Australia. I hope this helps.
DD
 
W

wuffles

New member
Hey there Kyle. I live in Canberra (and before that, Brisbane). I think a few doctors in Australia don't like to talk about the Vest because it can be such a good thing but is not funded here in Australia. The same thing happened with Pulmozyme a while ago, before it was listed on the PBS.

Anyway, you will find a lot of info on this site. Hope you find what you're looking for <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

wuffles

New member
Hey there Kyle. I live in Canberra (and before that, Brisbane). I think a few doctors in Australia don't like to talk about the Vest because it can be such a good thing but is not funded here in Australia. The same thing happened with Pulmozyme a while ago, before it was listed on the PBS.

Anyway, you will find a lot of info on this site. Hope you find what you're looking for <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

wuffles

New member
Hey there Kyle. I live in Canberra (and before that, Brisbane). I think a few doctors in Australia don't like to talk about the Vest because it can be such a good thing but is not funded here in Australia. The same thing happened with Pulmozyme a while ago, before it was listed on the PBS.

Anyway, you will find a lot of info on this site. Hope you find what you're looking for <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

mum2kj

New member
kybert,

this is the australian hill-rom addy,

Hill-Rom Australia PTY LTD
telephone: 02 8814 3000
fax: 02 8814 3030

unit 43, 5 Inglewood place, Baulkham NSW, 2153

or P/O Box 6947 Baulkham Hills NSW 2153

Her Name is Rose Harley, she is the telesales representative.
her number is (02) 8814-3001

I don't know about insurance covering it as I don't have insurance.
 
M

mum2kj

New member
kybert,

this is the australian hill-rom addy,

Hill-Rom Australia PTY LTD
telephone: 02 8814 3000
fax: 02 8814 3030

unit 43, 5 Inglewood place, Baulkham NSW, 2153

or P/O Box 6947 Baulkham Hills NSW 2153

Her Name is Rose Harley, she is the telesales representative.
her number is (02) 8814-3001

I don't know about insurance covering it as I don't have insurance.
 
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