Re: from Cheshire //survery

[Guest guest]

The Lung Association in Nova Scotia and the Canadian

division's focus tends to be mainly on COPD (emphysema

and bronchitis ... mostly) and asthma. I agree that

there should be a focus on other lung disorders.

Restrictive lung diseases for instance are a major

group. Bronchiectasis is a form of COPD that should

also gain more coverage. I would like one day to start

a foundation that focuses on orphan (rare) lung

diseases and other rarer diseases ... raise funds. If

I can get the foundation off the ground the focus will

be to raise funds for research into orphan diseases

and also to help families since medical treatments can

be costly and not everyone has the means to afford

their medical care even in countries with government

funded health care. It would also be great to develop

medical homes for people who have to travel for their

medical care. Toronto has " The Residence, " but it's

$55 per night. Many individuals and families with

lower incomes cannot afford these costs. Anyhow, lots

of work to do! When I stayed in Montreal there is a

wonderful Transplant house … Maison des Greffes. It

was only $15 dollars a night. Home provided three

meals a day plus snacks in between (all included in

the $15 dollar per day cost). Not to mention it was

like a home and everyone was very kind. The house was

clean and everything was just lovely. I was impressed

and wish that every city and town where people need to

travel for medical care could have such a place. Even

adults and their families need a Mc-like

house ... anyhow, sorry for getting off topic!

Hugs:0)

=====

) " Miracles happen with love..... " ..... Please support your local children's

hospital.... and " Give with all your might! "

http://iwkfoundation.org/

)Visit.... Children's Miracle Network.... http://www.cmn.org/ )

The Child Health Site: http://www.thechildhealthsite.com/

Care2's Race for Children in Need: http://children.care2.com/

______________________________________________________________________

Post your free ad now! http://personals.yahoo.ca

[Guest guest]

, i don't think that you were off topic at all.

we're not just people/caregivers with lung problems......we're humans with needs when we're away from home.

the residence you described sounds lovely, just like ronald mcdonald house.

having to travel to a distant city with lung problems is complicated enough with all the paraphernalia we require, so having a welcoming house to stay in and not break the bank is addressing the physical and emotional wellbeing of those staying there.........the price is excellent and the way it should be.

there is a place for people to stay in victoria on the island.

as for research within canada........at a recent better breathers meeting that roger attended~run by the bc lung association~they mentioned that several medical scientific teams were at work at university of british columbia, which was encouraging.

also on the topic of bc news............an alpha (the same genetic emphysema that roger has)girl who has been at end stage for a long time was air lifted to vancouver on december 23 and received a single lung txp.

she was out of icu within 3 days and walking and breathing well.........yeah!

jennifer in bc Holt wrote:

The Lung Association in Nova Scotia and the Canadiandivision's focus tends to be mainly on COPD (emphysemaand bronchitis ... mostly) and asthma. I agree thatthere should be a focus on other lung disorders.Restrictive lung diseases for instance are a majorgroup. Bronchiectasis is a form of COPD that shouldalso gain more coverage. I would like one day to starta foundation that focuses on orphan (rare) lungdiseases and other rarer diseases ... raise funds. IfI can get the foundation off the ground the focus willbe to raise funds for research into orphan diseasesand also to help families since medical treatments canbe costly and not everyone has the means to affordtheir medical care even in countries with governmentfunded health care. It would also be great to developmedical homes for people who have to travel for

theirmedical care. Toronto has "The Residence," but it's$55 per night. Many individuals and families withlower incomes cannot afford these costs. Anyhow, lotsof work to do! When I stayed in Montreal there is awonderful Transplant house … Maison des Greffes. Itwas only $15 dollars a night. Home provided threemeals a day plus snacks in between (all included inthe $15 dollar per day cost). Not to mention it waslike a home and everyone was very kind. The house wasclean and everything was just lovely. I was impressedand wish that every city and town where people need totravel for medical care could have such a place. Evenadults and their families need a Mc-likehouse ... anyhow, sorry for getting off topic!Hugs:0)=====) "Miracles happen with love....." ..... Please support your local children's hospital.... and "Give with all your might!" http://iwkfoundation.org/ )Visit....

Children's Miracle Network.... http://www.cmn.org/ ) The Child Health Site: http://www.thechildhealthsite.com/Care2's Race for Children in Need: http://children.care2.com/______________________________________________________________________ Post your free ad now! http://personals.yahoo.ca

[Guest guest]

Hello and , yes its lovely to have somewhere to stay, where

people are nice and the price doesn,t set you so far back that you get

depression from it all.

As you say paraphenalia, my lot here call it my tool kit.

We have places too, but not homes like that, although there is a guest house

at the bottom of the Prince Hospital here in Q, land.

It is lovely, but is a bit costly.

However it is basically on the hospital grounds so not much travel involved.

You do generally have to share a room though, and that can be hard.

We have accomodation houses, motels where we can stay with carer but not all

that cheap.

However again close to hospitals where Specialists are, and we have a

patient travel subsidy scheme. where you fill out forms hand them into your

nearest hospital for processing, then if Okayed, they arrange travel for

patient and carer, and accomodation, you generally can stay in these places

for up to 4 days at the concessional level of cost. while out patient, once

the patient is an inpatient they only cover carer 2 nights, unless

specialists contact home town hospital and state that the carer is required

to stay for support in life threatening circumstances etc.

These places are fully equipped , with kitchenettes,washing machines stoves

etc, need only purchase and cook your own food etc.

They are all very good and close to hospital of specialist care needed.

Travel back and forth is assisted too.But the hospital must be the nearest

one that does the procedure or has the specialists.

And the Gp must explain why you need a carer.

You must also have all forms signed again by specialist before returning

home, confirming all the reasons and details.You generally get charged a

small fee round $10-15, per stay. State govt, health pay the balance and the

fares, main fare, ie, plane, bus, train,or toward fuel if you use vehicle,

they estimate the mileage and reimburse your fuel.

So we don,t have it too bad.

It is all the inconvenience of long travel times, early mornings etc.

When I have to see my specialists in Bris, we go by tilt train, we have to

get a cab(4-15am) to bus terminal,(15mins) then a comuter bus to rail 40

minutes away.

Get the tilt train, 4hrs later arrive in bris, then a bus or another train

to whichever hospital, that is included in the free fare.

But not in the return fare, that is up to you, cabs etc are up to self.

So its the travelling to the hospitals from brisbane city, that is very

exhausting. and if you only have a day appt, and its before 3, you must

return that same day, which means rush back to bris rail station, for the

train 5pm( only train) get home at 10pm. so a very long day.

If appts are after 3 generally you can get accomodation etc paid for, or if

going into hospital or receiving outpatient treatment , tests xrays etc,

they allow you the concession.

Well right off the subject,

Hope you have a wonderful year ahead,, and keep happy,

Sandy