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RE: Digest Number 1475

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Hi to all in Bronch group.

Sandie I tend to agree a little with you about having to keep repeating ones

self, we really should do a

profile or like I do, I have a book beside the computer with peoples names(

bronch) where they live and age , etc, carer or the person with bronch etc.

No two people are exactly the same , no matter how similar our symptons,

conditions etc are.

to others---

There definately is no cure for bronch, however for most there certainly is a

lot that we can do to stave off, and prevent flare ups.

Good common sense is one, once you have learned all you can about yourself, then

make sure you also know the triggers etc.

That way you can begin to avoid things.

Also learning all you can about what works for self.

Ie excersise, even the lowest impact is better than none, steam, salt, foods

like yoghurt for reflux, but to also take with meds to stop the damaging of the

stomach etc.

Doctors and ourselves all have theories, and mine is that some as in our family

carry the gene, maybe something has to trigger that off, for bronch to really

show enough to be dx.

Also I am a firm believer that we also are already ( most) born with low immune

system, immune deficiancy, which then leaves us open and sus to infections,

viral particularly.

Measles, pneumonia, whooping cough etc.

For the mum with 14 yro, sounds like he was born with it, like asthma, the

funny thing is many of us love to do sport etc, swimming is great for asthma as

it is with bronch.

My grandkiddies all who have asthma, play soccer and swim, some play tennis

also.

I hope you don,t make him an invalid, if he is able to enjoy sport and keep on

the ab,s then gee let him be, as thats the best thing for him.

Trying to live as close to a " NORMAL " life as possible.

Just helping him to log down what effects him most, like what brings attacks on

etc, teaching him the natural foods full of not only vitamins, but minerals and

aslo the value of fish oils

for everyone.

The omegas and the acidophillis foods.

The tabs are OK, but one is much better getting the necessary amounts in foods

and things like yoghurt, cos they assist the gut, the bowel and well keep

infections down etc, as with garlic, ginger and onions etc.

He is young enough to learn all the right things and not become dependant on

everyone and everything.

He is youndg enough to learn all he meeds to do now, and set in concrete a

wonderfully healthy regime, that will come 2nd nature to him, like steamed up

showers, coughing and spitting out anything coughed up, taking regular meds " if "

Needed etc.

Rod I am posting info on flutter.

I have heaps of great material, to post anyone.

If you wish you can email me personally.

Prophlyactics, are to keep things at bay.

But most ab,s and meds are not prophlyactics.

For all who must have regular ab,s well that what you must do at the time.

However it isn,t good practice to just jump to ab,s without ever doing many

other things to assist in the prevention of flare ups etc.

Once a learned thing so many things you can do, take etc, to help, PD is another

to become 2nd nature even if you don,t feel you need it.

Like washing hands, making sure to wash hands each time you use a hanky etc.

That is a must, as is gently blowing nose, holding one nostril shut, and a few

soft blows, then swap and repeat, but immediately wash hands.

The only tome to blow both nostrils at same time and a little harder is to

unblock fluidy ears, but not too hard, just to hear the gentle pop.

Otherwise you can do far more damage.

As for draining of ears.

Only ever allow draining, with grommets( surgery) cos its done for both adults

and children.

And very successful.

I had them in at the age of 38. I am almost 60.

Only use metho drop, or t tree oil etc, if you have dry ears.

Otherwise use powderd mix of boracic acid, etc.

to dry out and keep fungus from forming and moving to inner ear, and tubes etc.

Any way must go, will post the info on polmozyme tomorrow, have quite a bit

about it too, for whoever asked.

Ps I posted an article from a paper I received today, regarding children having

very low immune systems at very young ages, and the increase in illnesses asa

result.

So do please click on the links I provided.

Must go, cheers to all.

Sandy

" Sec/ Co -ord HBCAG & GEMS.

Consumer/ carer rep to FCIMHS

Community Consultant on Mental Health /Fraser Coast.

Sandy R .

" Nothing about us without us "

HBCAG " Promoting Excellence in Mental Health "

________________________________

> Date: Sun, 10 Dec 2006 09:19:19 +0000

> From: bronchiectasis

> To: bronchiectasis

> Subject: Digest Number 1475

>

> Bronchiectasis Support Group

<http://groups.yahoo.com/group/bronchiectasis;_ylc=X3oDMTJkZ25oZTVpBF9TAzk3MzU5N\

zE1BGdycElkAzQwNTY4MTcEZ3Jwc3BJZAMxNzA1MDYxNTg5BHNlYwNoZHIEc2xrA2hwaARzdGltZQMxM\

TY1NzQyMzU5>

> Messages In This Digest (9 Messages)

> 1a.

> Flutter - resolved From: Roderick Macdonell

> 1b.

> was Flutter - Now: Canada From: Holt

> 2a.

> Re: My Mother From: Sunniesback55@...

> 2b.

> Re: My Mother From: Sunniesback55@...

> 2c.

> Re: My Mother From: Holt

> 3.

> Re: Flutter Valve Rod From: Holt

> 4.

> Re: new here From: Holt

> 5.

> Hi Sandie From: Holt

> 6.

> Headline - Why are our children's bodies attacking them? From: Sandy

> View All

Topics<http://groups.yahoo.com/group/bronchiectasis/messages;_ylc=X3oDMTJmaDAzYW\

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> Messages

> 1a.

> Flutter - resolved

<http://groups.yahoo.com/group/bronchiectasis/message/14200;_ylc=X3oDMTJyb2xlZnN\

1BF9TAzk3MzU5NzE1BGdycElkAzQwNTY4MTcEZ3Jwc3BJZAMxNzA1MDYxNTg5BG1zZ0lkAzE0MjAwBHN\

lYwNkbXNnBHNsawN2bXNnBHN0aW1lAzExNjU3NDIzNTk->

> Posted by: " Roderick Macdonell " roderick_macdonell@...

<mailto:roderick_macdonell@...?Subject=%20Re:Flutter%20-%20resolved>

roderick_macdonell <http://profiles.yahoo.com/roderick_macdonell>

> Sat Dec 9, 2006 3:53 am (PST)

> Dear all:

> Great. I finally found an ad on-line and will order.

> I will also try going directly to the local pulmonary rehab center for

treatment. Normally you need a referral from your family doc. I don't have a

family doc yet here where I have moved. The Canadian health care system is

generally a good one but there are annoying waits in the system.

> -Rod

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> 1b.

> was Flutter - Now: Canada

<http://groups.yahoo.com/group/bronchiectasis/message/14204;_ylc=X3oDMTJydTZ1NHJ\

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> Posted by: " Holt " maryholt12@...

<mailto:maryholt12@...?Subject=%20Re:was%20Flutter%20-%20%20Now:%20Canada>

maryholt12 <http://profiles.yahoo.com/maryholt12>

> Sat Dec 9, 2006 6:57 am (PST)

> I disagree, somewhat, about the Canadian health care system being good, as it

has not treated me well. I have not been able to receive specialised care for my

lung issues. At least have not received the care that I need and deserve. One

respirologist said my lung disease was all in my head and the respirology group

in Halifax has shunned, blacklisted, and refuse to even see me. Receiving care

from Halifax respirology group has been a nightmare. I have severe lung disease

(including advanced bronchiectasis), and contributing health issues. Have been

receiving the run around since childhood, and have still not found a

respirologist willing to take on my care. Have traveled to Toronto, Montreal,

and Saskatoon to see respirologists and to no avail. Several including a CF

doctor at St. Mikes had promised to follow me, but once back in Nova Scotia they

decide not to provide follow up telling me to return to Halifax. My family and I

have told them that Halifax respirologist are

> not doing anything and refuse to see me. In fact, I did have one respirologist

that was willing to follow me, but he never tried anything new, and if I brought

up a medication, he said it wasn’t helpful even though research shows it’s

helpful. That doctor never ordered PFTs, never ordered chest CT-scans, never

ordered CF sputum cultures, and never was willing to see me when I was having a

flare-up. He really did nothing. After having an argument with him last June I

fired him and refuse to see this man again. He’s not up on cystic fibrosis or

bronchiectasis and really, really needs to retire. If it were not for my family

doctor and infectious disease specialist no, one would be doing anything to

help. If I had the means, I'd go to the US for my respiratory care and to the

Mayo or Cleveland Clinic. Any system is good if you can receive care.

Increasingly it’s harder to get the necessary care in Canada and O2 and meds

should be covered for everyone outside the hospital

> system through a national pharmacare system that people could pay into based

on income levels or opt out of if they have private insurance. Too many people

are choosing between eating or medication or paying bills, and it should not be

this way in Canada or any other nation. Anyhow, my ID specialist and GP are

certain that I have cystic fibrosis based on my medical tests and symptoms and I

agree with them and the adult CF clinic refuses to see me. I'm certainly less

than impressed. My doctors agree that based on chest CT-scans, low PFTs, and to

improve my quality of life that I do need a double lung transplant. people with

bronchiectasis and CF receive double lung transplants due to the infection in

our lungs.

> Hugs:0)

> Liz with CF (??), bronchiectasis, asthma, on O2 24/7, etc .... Mommy to

Bonnie cat ... Proud aunt to six precious children ... Hoping, Praying, and

Wishing for new lungs in 2007!

> e-mail:maryholt12@... or

lungsformary@...

> Pre-Lung Transplant Journey - For updates please visit my carepage and leave a

message. Thank you!:0)

> carepages.com name:maryelizabethholt

> :o) " Miracles happen with love..... " ..... Please support your local

children's hospital.... and " Give with all your might! "

> http://iwkfoundation.org/

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

> " I don't give in, I don't give up, and I don't take no for an answer. "

> ~Doris ~

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

> Now you can have a huge leap forward in email: get the new Yahoo! Mail.

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> 2a.

> Re: My Mother

<http://groups.yahoo.com/group/bronchiectasis/message/14201;_ylc=X3oDMTJybTJub3J\

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> Posted by: " Sunniesback55@... " Sunniesback55@...

<mailto:Sunniesback55@...?Subject=%20Re:%20My%20Mother>

> Sat Dec 9, 2006 4:59 am (PST)

> In a message dated 12/9/2006 7:54:56 A.M. Eastern Standard Time,

> emprice@... writes:

> There is no real for

> sure " cause " , so stop beating yourself up over what the cause could be

> and concentrate on what you can do for the future to prevent permanent

> lung damage.

> Sometimes I feel like I'm talking to myself on this list.

> for some of us there's no definitive reason.but for others, such as

> myself..there is.

> As i've explained numerous times..my primary condition is alpha1 antitrypsin

> deficiency..as a result of this..my secondary condition..manifested by my

> A1AD is Bronchiactasis....so there in lies my dx and the reason for my

> bronchiactasis..

> Sandie in MD

> maybe if it bothers you that much and you need answers..start demanding

> them..ask your dr to test her for A1AD..it's a simple serum level blood test..

> Best Wishes

> Never Look Down on Someone

> Unless You're Gonna Help Them Up

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> 2b.

> Re: My Mother

<http://groups.yahoo.com/group/bronchiectasis/message/14202;_ylc=X3oDMTJydGFuZ3I\

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> Posted by: " Sunniesback55@... " Sunniesback55@...

<mailto:Sunniesback55@...?Subject=%20Re:%20My%20Mother>

> Sat Dec 9, 2006 6:06 am (PST)

> In a message dated 12/9/2006 7:54:56 A.M. Eastern Standard Time,

> emprice@... writes:

> There is no real for

> sure " cause " , so stop beating yourself up over what the cause could be

> and concentrate on what you can do for the future to prevent permanent

> lung damage.

> Sometimes I feel like I'm talking to myself on this list.

> for some of us there's no definitive reason.but for others, such as

> myself..there is.

> As i've explained numerous times..my primary condition is alpha1 antitrypsin

> deficiency..as a result of this..my secondary condition..manifested by my

> A1AD is Bronchiactasis....so there in lies my dx and the reason for my

> bronchiactasis..

> Sandie in MD

> maybe if it bothers you that much and you need answers..start demanding

> them..ask your dr to test her for A1AD..it's a simple serum level blood test..

> Best Wishes

> Never Look Down on Someone

> Unless You're Gonna Help Them Up

> Back to top

> Reply to sender <mailto:Sunniesback55@...?Subject=Re:%20My%20Mother> |

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> 2c.

> Re: My Mother

<http://groups.yahoo.com/group/bronchiectasis/message/14205;_ylc=X3oDMTJyOWdmbGI\

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> Posted by: " Holt " maryholt12@...

<mailto:maryholt12@...?Subject=%20Re:%20My%20Mother> maryholt12

<http://profiles.yahoo.com/maryholt12>

> Sat Dec 9, 2006 7:09 am (PST)

> I agree with Sunny. My family doctor is very good, one of the best I've ever

had. He believes that there is always an underlying cause for bronchiectasis.

Alpha-1 is rare. We should all be tested for it. Disorders involving cilia of

the lungs - Primary Cilary Dyskensia are also rare and deserve attention..

Cystic fibrosis is another disease that is rare. Symptoms do not always manifest

in childhood. Increasingly adults are being diagnosed and some have only had

symptoms start in later childhood (including adolescent years, here) or

adulthood. Sometimes people inhaled a foreign object into their airways, but

don't realise it. This can happen even to adults. Sometimes bronchiectasis is

due to childhood whooping cough or pneumonia. My point is that there is always a

reason for bronchiectasis. It just doesn't occur out of the blue. Something

happened to the lungs that has lead to them developing bronchiectasis. I agree

we need aggressive doctors and we need to push for answers.

> Even if they cannot uncover a reason at this time there is a reason. I'm going

to ask my GP to order a Alpha-1 test. We think its CF, but its good to cover

every base.

> Thanks:0)

> Liz

> e-mail:maryholt12@... or

lungsformary@...

> Pre-Lung Transplant Journey - For updates please visit my carepage and leave a

message. Thank you!:0)

> carepages.com name:maryelizabethholt

> :o) " Miracles happen with love..... " ..... Please support your local

children's hospital.... and " Give with all your might! "

> http://iwkfoundation.org/

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

> " I don't give in, I don't give up, and I don't take no for an answer. "

> ~Doris ~

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

> Now you can have a huge leap forward in email: get the new Yahoo! Mail.

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> 3.

> Re: Flutter Valve Rod

<http://groups.yahoo.com/group/bronchiectasis/message/14203;_ylc=X3oDMTJyazk5a2M\

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> Posted by: " Holt " maryholt12@...

<mailto:maryholt12@...?Subject=%20Re:%20Flutter%20Valve%20Rod> maryholt12

<http://profiles.yahoo.com/maryholt12>

> Sat Dec 9, 2006 6:30 am (PST)

> Hi Sandy,

> In Canada we do not have as many pulmonary rehab centres. There are none in my

community. Halifax has a small pulmonary rehab centre, but this is located over

an hour away. Unless one lives in a larger city like Toronto pulmonary rehab is

not as accessible to many Canadians. We can go through our doctors to get

flutters, acapella's, etc and order them through a home health store. Actually,

a respiratory therapist gave me my acapella.

> Eventually, our hospital hopes to offer pulmonary rehab. One problem is that

we do not have a respirologist (pulmonologist), and do not have the funds to get

such a centre up and running. Government so far has decided not to help, so

likely would need to get most of funds from private sector and individuals, but

the government would fund the staff. If the government doesn't want to fund the

staff and there is no respiratory specialist available its harder for regional

hospitals to get their own pulmonary rehab centres going. I agree its needed.

Many gaps exist in Canadian heath care. Availability of services are often

dependent upon where one lives.

> Thanks and Hugs:0)

> Liz

> e-mail:maryholt12@... or

lungsformary@...

> Pre-Lung Transplant Journey - For updates please visit my carepage and leave a

message. Thank you!:0)

> carepages.com name:maryelizabethholt

> :o) " Miracles happen with love..... " ..... Please support your local

children's hospital.... and " Give with all your might! "

> http://iwkfoundation.org/

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

> " I don't give in, I don't give up, and I don't take no for an answer. "

> ~Doris ~

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

> Ask a question on any topic and get answers from real people. Go to Yahoo!

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> 4.

> Re: new here

<http://groups.yahoo.com/group/bronchiectasis/message/14206;_ylc=X3oDMTJycmEwbjJ\

hBF9TAzk3MzU5NzE1BGdycElkAzQwNTY4MTcEZ3Jwc3BJZAMxNzA1MDYxNTg5BG1zZ0lkAzE0MjA2BHN\

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> Posted by: " Holt " maryholt12@...

<mailto:maryholt12@...?Subject=%20Re:%20new%20here> maryholt12

<http://profiles.yahoo.com/maryholt12>

> Sat Dec 9, 2006 7:27 am (PST)

> Dear Debbie,

> My doctors have been known to argue with the government that it will cost more

to hospitalise me than to provide the medications. This arguement has been

helpful, and hope it might help in your case.

> Hugs;0)

> Liz

> Sunniesback55@... wrote:

> In a message dated 12/8/2006 11:03:12 P.M. Eastern Standard Time,

debres@... writes:

> yes I'll let you know my results. I go to the Dr on the 21st.

> how do you get " infused " ???? its weekly???

> The Dr said if I have to ,, its hard to get the government to pay for it. ??

> thank you

> Deb..one step at a time. Get tested first. If in fact you do need

infusions..there's a lot of help. I am permanently disabled. Here in the states,

I'm on Social Security Disability and have Medicare. They pay for my infusions

100% and this stuff is very very costly. But we have a ton of information and

support, in the event you need it..let's hope you're serum levels are good..

> Sandie in MD

> Never Look Down on Someone

> Unless You're Gonna Help Them Up

> e-mail:maryholt12@... or

lungsformary@...

> Pre-Lung Transplant Journey - For updates please visit my carepage and leave a

message. Thank you!:0)

> carepages.com name:maryelizabethholt

> :o) " Miracles happen with love..... " ..... Please support your local

children's hospital.... and " Give with all your might! "

> http://iwkfoundation.org/

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

> " I don't give in, I don't give up, and I don't take no for an answer. "

> ~Doris ~

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

> Ask a question on any topic and get answers from real people. Go to Yahoo!

Answers.

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> Reply to sender <mailto:maryholt12@...?Subject=Re:%20new%20here> | Reply

to group <mailto:bronchiectasis ?Subject=%20Re:%20new%20here> |

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> Messages in this topic

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> 5.

> Hi Sandie

<http://groups.yahoo.com/group/bronchiectasis/message/14207;_ylc=X3oDMTJyMzNmbDd\

uBF9TAzk3MzU5NzE1BGdycElkAzQwNTY4MTcEZ3Jwc3BJZAMxNzA1MDYxNTg5BG1zZ0lkAzE0MjA3BHN\

lYwNkbXNnBHNsawN2bXNnBHN0aW1lAzExNjU3NDIzNTk->

> Posted by: " Holt " maryholt12@...

<mailto:maryholt12@...?Subject=%20Re:Hi%20Sandie> maryholt12

<http://profiles.yahoo.com/maryholt12>

> Sat Dec 9, 2006 9:20 am (PST)

> Hi Sandie,

> Please excuse my mistakes for your name - Sandy instead of Sandie.

> Thank you:o)

> Liz

> e-mail:maryholt12@... or

lungsformary@...

> Pre-Lung Transplant Journey - For updates please visit my carepage and leave a

message. Thank you!:0)

> carepages.com name:maryelizabethholt

> :o) " Miracles happen with love..... " ..... Please support your local

children's hospital.... and " Give with all your might! "

> http://iwkfoundation.org/

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

> " I don't give in, I don't give up, and I don't take no for an answer. "

> ~Doris ~

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

> Share your photos with the people who matter at Yahoo! Canada Photos

> Back to top

> Reply to sender <mailto:maryholt12@...?Subject=Re:Hi%20Sandie> | Reply to

group <mailto:bronchiectasis ?Subject=%20Re:Hi%20Sandie> | Reply

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> 6.

> Headline - Why are our children's bodies attacking them?

<http://groups.yahoo.com/group/bronchiectasis/message/14208;_ylc=X3oDMTJydDB0bjd\

mBF9TAzk3MzU5NzE1BGdycElkAzQwNTY4MTcEZ3Jwc3BJZAMxNzA1MDYxNTg5BG1zZ0lkAzE0MjA4BHN\

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> Posted by: " Sandy " sillysandy82@...

<mailto:sillysandy82@...?Subject=%20Re:Headline%20-%20Why%20are%20our%20\

children's%20bodies%20attacking%20them?> sandywho82

<http://profiles.yahoo.com/sandywho82>

> Sat Dec 9, 2006 11:43 pm (PST)

> Dear Diane Farnsworth,

> You have been sent this article link by Sandy courtesy of theage.com.au

> Personal Message: Hope all get some good info from the article, Sandy

Australia.

> Why are our children's bodies attacking them?

> Christian Catalano, Medical Research Reporter

> December 4, 2006

> To view the entire article, click on:

http://www.theage.com.au/articles/2006/12/03/1165080818746.html

> Sign up for news updates from The Age newsroom emailed each morning and

afternoon: http://theage.com.au/newsletters/subscription.html

> Visit http://theage.com.au for updated local and world news, sports results,

entertainment news and reviews and the latest technology information.

> Back to top

> Reply to sender

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