Re: Re: Newly diagnosed

[Guest guest]

Am curious to know if many of you are

readers.  Since we seem to have down times, I would hope that most are.  We could

occasionally recommend good books to each other, not necessarily health

related.

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of elizabeth557462

Sent: Tuesday, November 11, 2008

5:35 AM

To: bronchiectasis

Subject: Re:

Newly diagnosed

Joy thanks very much for the info much appreciated - every bit

helps. You sound as though you have really been through it over the

years. I feel for you. I'm sure your breadth of knowledge is

greater than most GP's here in UK.

Thank you for sharing it with us,

and in anticipation for continuing to do so.

I hope you have a good winter without too many infx. The awful

british winter is upon us - not very cold just constant damp - and

that's when it's not raining! I'm sure this weather makes things

worse with lungs or maybe it's just so depressing it feels thats way!

Keep well and happy.

Liz

>

> Hi Liz,

> Many ­ probably most ­ people go along for many years w/out much

change, but

> certainly repeat infx, especially if left untreated or develop into

more

> severe infx such as pneumonia etc, each time cause further

deterioration, so

> it¹s an accumulative process.... Hard to avoid viruses, but watch

for signs

> of not getting well, changes in cough and sputum colour, try to

have a good

> doctor if at all possible !! And a good specialist too, really

helps.

>

> I¹ve come to the conclusion I¹m as bad as I am b/cause of poor

management,

> lack of information and help when I was younger, thus leading to

several

> pneumonias, then the past decade of doctors failing to refer me to

> specialists, and the past 3 years the specialist I had failing to do

> anything at all.... So most treatment is too late for me, oral abx

don¹t

> work, only management now is 14-day IV abx (x2), for me

torture.... Hence

> my urging you to seek out the best info you can, the best medical

support

> you can find, support groups, anything, where you live, to help you

maintain

> your lung health and avoid unnecessary deterioration.

>

> I hope I haven¹t scared you ­ I get the feeling most people don¹t

get this

> bad, I¹m a bit unusual in having the condition since infancy, was dx

> widespread and well-advanced age 18, whereas most people only find

onset

> later in life. I know have cystic bronchiectasis, which is long-

term damage

> result.

>

> The degree to which the condition worsens is pretty much in line

with

> duration and severity of each infx, so if you¹ve been managed well

so far,

> and as you¹re learning, can avoid long untreated infx, your

deterioration

> will be negligible ... At least in UK your doctors may at least

know of

> it!

> All the best,

> joy

>

[Guest guest]

Hi Liz,

I’m rather stunned I could have more knowledge than UK docs, surely not!!! Most of my info has been gleaned from UK websites and other reputable sites US or Aus (govt or major hospital sites), as well as Oxford handbooks, gen med and respiratory medical dictionaries – and pummelling docs for answers – not easy & they DON’T like it!!!!!!!!!

We’re entering our summer here in Aus, and being in Cairns is our tropical hot and just beginning wet season.... Usually, not having the cold winters, I’m best in our cool season but spent most of it in and out of hospital! At least am approaching this hot season sans infx, so maybe I can enjoy xmas for a change.....here’s hoping!!!

All the best,

joy

[Guest guest]

Joy

Interestingly I often get sick around Christmas. The weather is often unpredicable. It is very busy at work leading up to Christmas so this year I'm not doing any extra work leading up to the end of the year. I'm taking it easy.

Keep well everyone. Theresa

Subject: Re: Re: Newly diagnosedTo: "bronchiectasis " <bronchiectasis >Received: Tuesday, 18 November, 2008, 6:55 PM

Hi Liz,I’m rather stunned I could have more knowledge than UK docs, surely not!!! Most of my info has been gleaned from UK websites and other reputable sites US or Aus (govt or major hospital sites), as well as Oxford handbooks, gen med and respiratory medical dictionaries – and pummelling docs for answers – not easy & they DON’T like it!!!!!!!!!We’re entering our summer here in Aus, and being in Cairns is our tropical hot and just beginning wet season.... Usually, not having the cold winters, I’m best in our cool season but spent most of it in and out of hospital! At least am approaching this hot season sans infx, so maybe I can enjoy xmas for a change.....here’s hoping!!!All the best,joy

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[Guest guest]

Dear Thereza,

Also, at this time of the year, I too usually get sick. However I'm still in a well state....just hope it keeps up. I'm taking extra fatty acids such as almonds and fish oil plus eating a bit of crystialized ginger each morning.

Stay well all,

Eileen-FL

From: joy <endiandraixa (DOT) net.au>Subject: Re: Re: Newly diagnosedTo: "bronchiectasis@ yahoogroups. com" <bronchiectasis@ yahoogroups. com>Received: Tuesday, 18 November, 2008, 6:55 PM

Hi Liz,I’m rather stunned I could have more knowledge than UK docs, surely not!!! Most of my info has been gleaned from UK websites and other reputable sites US or Aus (govt or major hospital sites), as well as Oxford handbooks, gen med and respiratory medical dictionaries – and pummelling docs for answers – not easy & they DON’T like it!!!!!!!!!We’re entering our summer here in Aus, and being in Cairns is our tropical hot and just beginning wet season.... Usually, not having the cold winters, I’m best in our cool season but spent most of it in and out of hospital! At least am approaching this hot season sans infx, so maybe I can enjoy xmas for a change.....here’s hoping!!!All the best,joy

Start your day with Yahoo!7 and win a Sony Bravia TV. Enter Now.

[Guest guest]

,

I seldom read the bronchiectasis notes anymore, but when

you name popped up I was inspired to answer.

I took your advice two or three years ago (can't remember

exactly) and have been in good lung health since. I had not

tried the tea tree oil on a cue tip, but will since it seems

simpler than in haling the steam. PS. None of my friends

beleive tea tree oil works. More's the pity.

Just returned from a trip to Tahiti. Now THERE is a place for

clean air, warm swimming water and lots of exercise.

Cheers and good health always,

Lee

travelling with bronchiectasis

>

>

>

> Hoping for more advice please! we're planning to travel to North africa

> next month to visit family in a rural area. There are private hospitals

> which are better than the share-a-bed, bring your own medicine type

> local hospital, but I am worried about the 9yr old twins'

> bronchiectasis, especially because of the range of temperatures they'll

> meet in a day. Should i take a nebulizer with us? How does that work

> differently to the inhalers? or will lots of their inhalers be enough?

> Obviously I'll be taking antibiotics to be made up if necessary, but is

> there anything else i should be aware of? i know a friend went to

> another part of N.africa and the private hospital had oxygen tanks but

> they had run out of oxygen! Hopefully all will be well, but need

> others' advice just to be on the safe side please!

>

[Guest guest]

Tea tree oil is powerful stuff. My favorite health advisor, Dr. Weil, has been recommending it for years. Try it for toenail fungus. Most of the time I dilute it a bit with an edible oil becuase of it's strength. Don't use on deep wounds since it's power to close and heal over the opening can leave bacteria inside the wound. Kay

,I seldom read the bronchiectasis notes anymore, but whenyou name popped up I was inspired to answer.I took your advice two or three years ago (can't rememberexactly) and have been in good lung health since. I had nottried the tea tree oil on a cue tip, but will since it seemssimpler than in haling the steam. PS. None of my friendsbeleive tea tree oil works. More's the pity.Just returned from a trip to Tahiti. Now THERE is a place forclean air, warm swimming water and lots of exercise.Cheers and good health always,Lee

travelling with bronchiectasis> > > > Hoping for more advice please! we're planning to travel to North africa > next month to visit family in a rural area. There are private hospitals > which are better than the share-a-bed, bring your own medicine type > local hospital, but I am worried about the 9yr old twins' > bronchiectasis, especially because of the range of temperatures they'll > meet in a day. Should i take a nebulizer with us? How does that work > differently to the inhalers? or will lots of their inhalers be enough? > Obviously I'll be taking antibiotics to be made up if necessary, but is > there anything else i should be aware of? i know a friend went to > another part of N.africa and the private hospital had oxygen tanks but > they had run out of oxygen! Hopefully all will be well, but need > others' advice just to be on the safe side please!>

[Guest guest]

Hi Lee,

Tea tree oil comes from Australia so have used it for years – great for cuts, grazes, or put (soak a bit on tissues, cotton ball, hanky) in pillow if sinuses stuffy, helps breathe easier at night.... Can be drying on skin if use a lot tho. Eucalyptus oil is similar in properties – very aromatic.

I put cotton wool swabs soaked in either in cupboards with sheets/towels or anywhere gets a bit damp-mold smelling, really freshens things up, cockies don’t seem to like it.

Happy breathing J

Joy

-- --

" Wealth is nothing, position is nothing, fame is nothing.

Who you become inside is everything.

What happens to you is not as important as how you react to what happens. "

[Guest guest]

Hi ,

I guess I joined this group more recently. Great to hear your success with keeping well. Reminds me of when I still could – walk steep climbs (bushwalking can be pretty demanding here), swim in surf, dance heaps... Just a spell in the garden would easily remove gunk without fuss.... Oh, well, not so now. I got a bad flu in 95, never really recovered in the sense that I got bad bronchitis (always did every winter tho), but wouldn’t clear up. I started asking about resistance to abx was prescribed, told, oh no, that doesn’t happen. Nearly a decade later before a dr asked for sputum to check what bugs and resistance. And hey, guess what?! Resistant to all, plenty of Psa, and then Candida.... I got rid of the Candida after 5 yrs. I had 5 rounds of IV abx last year (not a merry go round!) - & now have additional Psa & 3 more pathogens, 2 bacterial, 1 fungal

But, I am now getting out into my beloved rainforest again a bit, I won’t do 8 km any more, just keep to more easy walks etc, but doesn’t take much to puff anyhow. I had given up on being able to do this ever again, so even this much is a bonus.

You are so right about every infx does damage lungs – so prevention is by far best, as there so far seems no cure for that damage...

Happy breathing J

Joy

-- --

" Wealth is nothing, position is nothing, fame is nothing.

Who you become inside is everything.

What happens to you is not as important as how you react to what happens. "