Re: new member bronchiectasis group

[Guest guest]

Thank you for the welcome to your group. I am 66 years old, retired

teacher, asthmatic since early childhood (weekly injections at R.P.A.H. for

some time) till c.16, when I seemed to " grow out of it " , only to rediscover

it at c.40 (c.1975). After about 6 years GP referred me to a specialist at

Miranda who prescribed Ventolin, Pulmicourt and theophiline tablets, with a

couple of short courses of prednisone. He encouraged me to exercise which I

did (aerobics - most effective!) for 7 years until car accident left me with

gammy leg. Since then (1990) all downhill - major problem enormous amounts

of mucus, usually (now permanently) infected and affecting nasal sinuses as

well as chest. Several spells of pneumonia over the years. Unable to afford

Miranda doctor, sought help from St 's clinic (Dr M. Burns) who

diagnosed bronchiectasis (he grudgingly accepted asthma after allergy tests,

but regards B. as the main culprit). Pattern last few years has been to get

bad infection late in winter, cultivate it for some months until throw it

off during summer in time for next dose. Current infection (2001 model)

worst ever, seems permanent. Sinus surgery in 1/2000 very helpful, but now

due again. Breathlessness and malaise increasing. Complications arising

from worsening arthritis and side effects from anti-inflammatories. In late

1994 developed allergy to penicilin, so Dr Burns tells me there's no

antibiotic to help me - he hopes bug might just " go away " if I " soldier

on " .... See Dr Burns again next month - will report. Look forward to hearing

from you.

----------

>From: bronchiectasis Moderator <bronchiectasis-owner >

>To: budda@...

>Subject: Welcome to the bronchiectasis group

>Date: Tue, 4 Jun 2002 2:07 PM

>

>

> Hello,

>

> I've added you to my bronchiectasis group at Yahoo! Groups, a free,

> easy-to-use email group service. As a member of this group, you

> may send messages to the entire group using just one email address:

> bronchiectasis . Yahoo! Groups also makes it easy to

> store photos and files, coordinate events, and more.

>

> Here's a description of the group:

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

>

> Bronchiectasis is a serious lung disorder caused by the inreversable

> dilation of the bronchioles of the lung. The symptoms are breathlessness,

> asthma, bronchitis and severe lung congestion.

>

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

>

> Here's my introductory message for you:

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

>

> Dear Ruth,

>

> I've now subscribed you to the group. Perhaps you could send an

> introductory message to the group telling them of 's symptoms and see

> if someone has some useful advice.

>

> To send an email to the group, just address it to

bronchiectasis .

>

> Di Farnsworth.

>

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

>

> TO START SENDING messages to members of this group, simply send email

> to bronchiectasis

>

> If you do not wish to belong to the bronchiectasis group, you

> can unsubscribe by replying to this message, or by sending an email to

> bronchiectasis-unsubscribe

>

>

> Regards,

>

> Moderator, bronchiectasis

>

>

> SPECIAL NOTE FROM Yahoo! Groups: Because Yahoo! Groups values your privacy,

> it is a violation of our service rules for moderators to add subscribers

> to a group against their wishes. If you feel this has happened, please

> notify us at abuse

>

> P.S. If you would like to learn more about the bronchiectasis group,

> please visit http://groups.yahoo.com/group/bronchiectasis

>

>

[Guest guest]

In late

1994 developed allergy to penicilin, so Dr Burns tells me there's no

antibiotic to help me - he hopes bug might just "go away" if I "soldier

on".... See Dr Burns again next month - will report. Look forward to hearing

from you.

Have they ever taken cultures of your secretions to find the bug or test for sensitivities?

My son has severe bronchiectasis and a persistant infection but eventually they discovered it was pseudomonas, this is a seriously resistant bug but can be kept at bay for the ost part with inhaled colomycin or gentamycin, with periodical IV antibiotics...sorry can't remember which one....but although it is never eradicated it can be kept to a minimum for a large part of the time to prevent further damage. has just had a two week course of IV's and has been on inhaled colomycin now for three weeks. It has kept him so much better. He has gone from having little energy to get up to the toilet to the point where we are having to tell him to slow down! It sure cheers my heart to see him dancing again!

Hope you get some relief soon.

much love

Tina Hillier Mum to , 12 years old and possesor of an Extra Special Chromosome.

Rosie 10 ( who enjoys a life enhanced by the Joys and Trials of CdLS)

5, A budding Artist and Singer, Famously ignoring the fact that his eyesight is deteriorating.

And who is 3 years old and Very Very Loud!

http://uk.briefcase.yahoo.com/tdlhillier

[Guest guest]

Tina

Thanks for your response. I hold the record for number of sputum cultures processed by various institutions around Sydney! Dr Burns at St 's reckons he knows my bug(s) intimately, but my allergy to penicilin and over-exposure to antibiotics generally have led him to adopt current policy of " soldier on " . When I see him next time I will mention the treatment you outline and see if he salutes.

He maintains my congested state impairs the efficacy of inhaled drugs like ventolin and pulmicourt which can't penetrate the barrier of mucus - when I confess to some frustration at the lack of proactive treatment, he tells me I could go around doctors until I find one who claims he can help me, but he is cynical of the possibility, so I guess I'll just persevere - for a time, anyway. Will report .

Hope maintains his improvement - at 12 I was asthmatic but fairly active except for spells of severe " attacks " - I remember smoking horrible asthma cigarettes and then a new inhaler called (I think) aspaxadrene in a glass tube with rubber squeeze bulb, which gave limited relief. All the best to you and your family, who sound like a lot of work and worry (and love). Our two have flown the coop, leaving us with only the dog and four cats to cope with. Are we better off?

Regards from

----------

From: rosiejoy@...

To: bronchiectasis

Subject: Re: Re: new member bronchiectasis group

Date: Thu, 6 Jun 2002 7:17 AM

In late

1994 developed allergy to penicilin, so Dr Burns tells me there's no

antibiotic to help me - he hopes bug might just " go away " if I " soldier

on " .... See Dr Burns again next month - will report. Look forward to hearing

from you.

Have they ever taken cultures of your secretions to find the bug or test for sensitivities?

My son has severe bronchiectasis and a persistant infection but eventually they discovered it was pseudomonas, this is a seriously resistant bug but can be kept at bay for the ost part with inhaled colomycin or gentamycin, with periodical IV antibiotics...sorry can't remember which one....but although it is never eradicated it can be kept to a minimum for a large part of the time to prevent further damage. has just had a two week course of IV's and has been on inhaled colomycin now for three weeks. It has kept him so much better. He has gone from having little energy to get up to the toilet to the point where we are having to tell him to slow down! It sure cheers my heart to see him dancing again!

Hope you get some relief soon.

much love

Tina Hillier Mum to , 12 years old and possesor of an Extra Special Chromosome.

Rosie 10 ( who enjoys a life enhanced by the Joys and Trials of CdLS)

5, A budding Artist and Singer, Famously ignoring the fact that his eyesight is deteriorating.

And who is 3 years old and Very Very Loud!

http://uk.briefcase.yahoo.com/tdlhillier

[Guest guest]

> In a message dated 05/06/02 02:04:57 GMT Daylight Time,

> budda@...

> writes:

>

>

>

> > In late

> > 1994 developed allergy to penicilin, so Dr Burns tells me there's no

> > antibiotic to help me - he hopes bug might just " go away " if I " soldier

> > on " .... See Dr Burns again next month - will report. Look forward to

> hearing

> > from you.

Hi , hope you go on ok - let us know.

I too have bronchiectasis complicated by pseudomonas as does .

12 months ago it flared up due to being exacerbated by the hot and stuffy and

very dry, office that I work in. I ended up on the IV drip for a week, which

was gentamycin. Then they gave me the colomycin to inhale. I hated that - and

they took me off it after a couple of months.

My doctor has written to the people I work for telling them I should not return

till office conditions have improved - I am still waiting, and have been off

work since last October although fit for work since Christmas. Whatever they

do, I am frightened of going back to the office in case I am ill again - as I

have heard that every flare up is more damage to the chest.

I now take nothing for the pseudomonas..... they said leave it till it flares up

again. What do you think about that everyone? Has anyone else had that said? Is

it ok?

When in hospital about 4 years ago now,I overheard the doctor saying I had

MRSA..... nothing was done except to discharge me pretty quick! I am now

worried event hough the sputum cultures have not shown it lately that it is

there and doing much damage... what can I do about this? Surely they should

have told me I had MRSA to my face?? Is there anything I can do?

Ann

(aged 50)

[Guest guest]

Ann

Pseadomonas is multiresistant although not strictly MRSA. Maybe that was what they meant. 's consultant is very keen to prevent another flare up as he has a lot of damage already and as you rightly say every flare up is causoing more

Tina Hillier Mum to , 12 years old and possesor of an Extra Special Chromosome.

Rosie 10 ( who enjoys a life enhanced by the Joys and Trials of CdLS)

5, A budding Artist and Singer, Famously ignoring the fact that his eyesight is deteriorating.

And who is 3 years old and Very Very Loud!

http://uk.briefcase.yahoo.com/tdlhillier

[Guest guest]

No Tina - they said I had MRSA in addition to Pseudomonas.... now no tests show it up

I wonder if they mixed your results with someon elses? Or maybe God intervened? We often pray for it then refuse to believi it! Oh God I believe help thou my unbelief! This must be our prayer.

Much love

Tina Hillier Mum to , 12 years old and possesor of an Extra Special Chromosome.

Rosie 10 ( who enjoys a life enhanced by the Joys and Trials of CdLS)

5, A budding Artist and Singer, Famously ignoring the fact that his eyesight is deteriorating.

And who is 3 years old and Very Very Loud!

http://uk.briefcase.yahoo.com/tdlhillier

[Guest guest]

> Ann

> Pseadomonas is multiresistant although not strictly MRSA. Maybe that was

> what

> they meant. 's consultant is very keen to prevent another flare

> up as

> he has a lot of damage already and as you rightly say every flare up is

> causoing more

No Tina - they said I had MRSA in addition to Pseudomonas.... now no tests show

it up.... but I was under the impression that once you had got it, you couldn't

get rid of it.... ?

Ann