Hi all

[Guest guest]

Thanks Joan and MISS ANNEE is going to have to be careful she is not that far

out to be moving !

Hi all

I met with Annie this pm - she looks great! The move is finished (except for

unpacking) and she is tired. She has lost weight and has that wonderful

personality.

We enjoyed Shoney's soup and a real nice visit.

Wanted to tell you how well she looks in person!

Joan from Va soon 3-22

[Guest guest]

Hi to everyone-- well I surely hope this gets through OK.

Somehoe my posts are not getting onto the sight.

I am receiving posts. BUT my replies and posts don,t seem to get through--

Well I am off to Brisbane on Wednesday- to sit on special committee for Mental

health- we are launching a new statewide Advocacy group etc.

My own health has been so bad I have had to remain in bed most of the day due to

pain and discomfort- unable to sit , or lay is making life hell at present-

Laying well hadn,t been doing that for years because of lungs etc so have heaps

of pillows etc, however since this damn henia, I now can only lay on one side

and FLAT- so cannot sleep, nOR breathe.

I am actually woken from any sleep I do get by lack of oxygen- just wake

panicking- so then have to get carer to help turn me over- 2-3 times a night-

almost too afraid to shut my eyes.

I have had several emails from people with bronch who suffer with depression

etc.

It is very common with people with chronic illness.

BUT even more so in people who have COPD.

I recently went to a funeral of a friend of a friend- supporting their family-

The funeral wasfor a lady who was only 48-had 4 grown young family. and her

first granchild was on its way-- it was after the funeral I was asked to chat to

family-- yes for mental health concerns etc.

BUT because the woman had bronchiectasis.

She had had it for over 15 years-- all the medicines and treatment she had had-

caused so many other chronic and acute conditions--

Her family were told that most of her problems stemmed from her bronch--her

bowell problems- that resulted in the need for colostomy- then an ileostomy-

then 2 forms of cancer- one was meant to be result of all the inhalations.

Then C of kidneys-- resulting in well another bag-- well she had just decided

she couldn,t go through more surgery etc, she had had enough-

She had threatened to attempt suicide several times, and I had been called- BUT

not once was I aware she had bronch- asthma yes, emphesyma yes.

This poor woman, her poor family-- none knew anything about bronch at all.

NOR had her doctors- all had treated her for many years in all states of

Australia- YET none gave her decent information-

Just kept telling her each area would be better climate etc- thus so many moves

etc she was also told her diabetes was caused by her bronch treatment-

This poor family -all have asthma-- all have become too afraid to continue their

own medication- because they were told by doctors that they will all more than

likely have what mum had- and probably all die YOUNG- how depressing, how

terrifying for a family--

All these huge surgeries this woman had been through- right up to a triple

bypass- a 9 hr op. 4 months earler. all the anaesthetics etc.

She felt unwell on a Monday evening- cancelled dinner with family-- next day

went in and out of consciousness- put in hospital, flown to Brisbane- same

night- and died within 9 hours of arrival-- lung infection- death cert said-

BLADDER cancer--

She had lung infection from kidney failing--that caused by much use of

inhalers,bladder infected , unable to be treated well because of now multiple

allergies to medications.

I just hope we all collectively can and will make a difference to the lives of

others with bronch.

Maybe we can insist on more research-- because it is blatantly obvious that many

health pros still have no idea..

This woman didn,t die from BRONCH-- yet her family had been told that that is

really what she had died from, and they should be very careful that they didn,t

have it .

One family member was told " who knows bronchiectasis maybe contagious " no one

really knows.

God- how do we eduacate these professionals.

Please all keep your famil and your doctors as informed as you can--

Show them as much information as you can-- they will listen- if you get them to

be interested.

Even if it means every couple of months asking for a longer appointment etc.

People need to have access to real and correct information.

Flyers , posters etc- perhaps more in COPD week etc.

Any way-- no wonder people get depressed.

I know it is depressing - this email- BUT I do want to remind everyone--that it

isn,t bronch that is fatal-- and to remind all that there is so much a person

can do for them selves, and 2 major things are- get all the muccous up and out

regularly-- use puffers, whatever- but remember to rinse mouth after, and please

DRINK lots of fluids- it is vital information--

Bye again- hugs Sandy