Re: moderator ....

[Guest guest]

I like it the way it is now also.

Carolyn

Why can't we just keep it like it is now? I don't understand. Maybe I haven't been following closely enough.

Cindi W.

To: bronchiectasis Sent: Sun, June 19, 2011 8:50:49 AMSubject: Re: moderator ....

Suzanne, I would suggest a new list, but how will you get everybody? my worry is that I will lose you. Joan Fl, USA

Re: moderator ....

I think we have two choices: stay as we are (we don't have to "approve" posts so it works), or start a new list and invite all on this one to switch to it and provide a link. Joy or any of us can be the "List Owner" and Moderators can be appointed by that person. I would be glad to start one and get it up and running. It cannot have the same name as that one is "owned" by the vanished List Owner, but we could have something similar.Just let us know what all you members want to do.Suzanne

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[Guest guest]

Suzanne,

the main thing that concerned during the move, my computer playing

up, me being not well ... any time I can't get online often enough to

check if anyone is wanting to join means that someone who may really

need such a site as this is denied.

I value it so hugely, it has made such a difference to my own ability

to manage my own bronch & understand all its vagaries that I'd hate

anyone not to be able to have the same....

that's me ... For me the most important thing is that new people can

find us and join as well as for ourselves to continue to benefit.

How it's done I'm fine with whatever works.,

thx so much for being able to take this as a List Owner, if that's

what transpires...

cheers,

joy h

[Guest guest]

hi Joan,

I'm one of the 'Joys', in Australia, and was asked to take on a role

of " acting moderator " last year by Di Farnsworth, also of Australian,

who set it up - don't know when but I believe quite a long time ago?

She asked me to take over for 2-3 months as she was unwell. Since

then I've been unable to contact her, likewise Yahoo.

there is another Joy as well, from US,

cheers,

joy h

[Guest guest]

Liana,

good point about keeping this one open with the years of

accumulated info on it. The issue of any of us as a moderator

becoming ill - and dying! - is a real one when most of us have this

disease! Hence having 2-3 moderators, and ability to 'pass the

torch' on without this degree of confusion really makes sense,

joy h

[Guest guest]

hi Joan,

er, I NOT actually a moderator which why there is a problem. I was

given privileges to accept/deny new applications, that was all. If

I'm not able to do that, then everyone continues unaware, but new

applicants will miss out on being able to access this wonderful

source of support and information.

Please understand, that as we stand WE HAVE NO MODERATOR!!

cheers,

joy h (Oz)

[Guest guest]

BECAUSE WE HAVE NO MODERATOR! PLEASE READ RECENT POSTS EXPLAINING

THIS SITUATION - THERE ARE A FEW NOW...

joy h (Oz)

[Guest guest]

hi Suzanne,

HOW does one " post an invitation to the new list and the 'closing' "

of this one? I've no idea!

I've had SOOO much trouble with Yahoo ... time and again I've tried

to re-sign a password and each time come to the code - it doesn't

show, or doesn't accept...

If I'd realised that not going into the site for more 2 months(?)

meant that belonging to it became void I'd have made more effort. I

always had hassles, so gave up I guess, also felt my time better

spent researching / answering whoever I could maybe help - so that's

what I did.

Sorry folks, bit useless on this stuff!

joy h (Oz)

[Guest guest]

Thanks Liana for your excellent explanation,

your ideas of having folders for articles such as " how to treat

bronch " sound excellent. I have a stack of articles I've researched

over the past few years - folders labelled 'medications', 'bronch

etc' (gerd, sinusitis etc), 'pathogens', 'equipment', 'general info'

etc etc. How much more useful to have them available to anyone

looking up any of these without the time-consuming " vetting " I did in

the process (ie weeding out sus sources).

It would certainly be great to have ideas such as yours put into action.

btw I don't recognise your name as one cropping up before now. Are

you a " lurker " ? - no offence meant! I realise some people read info

and posts, and choose not to write often

cheers,

joy h (Oz)

[Guest guest]

Hi all I too am mystified how out of touch I have become--

I do watch on - and do have long history with this group.

Joy ( in Aust) I wasn't aware you were moderating alone- I thought you was still doing with

The moderator of the "pink disease" name escapes me at present.

This group really does need to stay- it is a vital link to many.

Only yesterday I was in a Mental Health meeting ( my area of work) when a person gave me the names of 5 people with bronch

We are very involved with the Div of GP's and they had heard that I have bronch and of 2 of my family members, but also that I know of many with same, whom I have given this bronch site info

in past etc so I really do believe it needs to stay-- even if not with yahoo-perhaps on FB.

Very easy to moderate that- I have 4 groups on FB and moderate 2.

I have a co moderator to share with if too busy- we invited all to join- then closed after the bulk had replied -( showed interest)

Remained closed only till people felt confident-then opened you do have plenty of control of the sites too.

I am very busy but am happy to be on a rostered set up-ie.

each do a week a month as moderator--

if this is any help.

Cheers all-

Hope you have been able to find warm dry accommodation Joy--

We are FREEZING here and half the city is down with new strain of very bad flu.

Its got many down with pneumonia too

Sandy (Q'land Australia)

Attachment: vcard [not shown]

[Guest guest]

Yes there is two women named Joy. I am Joy L from Wi and the other Joy is our moderator.

To: bronchiectasis Sent: Sun, June 19, 2011 11:10:05 AMSubject: Re: moderator ....

sounds good. are you sure there aren't 2 women named Joy. one has been moderator for years.

Re: moderator ....

The present "acting moderator" is Joy in Australia.It would be very easy to get everyone to switch. Joy could just post an invitation to the new list and the "closing" (it can't truly be shut down as we're not the owners) of the old. A link to the new list would be given and everyone could then ask Yahoo if they might join it.I went through this at least twice with a Cavalier list I've been on for at least 15 years. We lost a few people (those who join but never read the posts or post themselves), but all the active members followed.Suzanne

No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1382 / Virus Database: 1513/3713 - Release Date: 06/19/11

[Guest guest]

hi Liana,

all of a sudden I'm not getting ANY posts from the bronch group!

None at all. Several of you, such as yourself, Kay and Jaqueline

post to me personally, but otherwise I feel like I've been cut off

Yahoo. There is another group I see posts from, none there either.

Without being able to access, I can't go online to see posts .... oh

my g what next!!!

THIS NOW MEANS NO NEW APPLICANTS WILL BE ABLE TO BE APPROVED!

will give the instructions you sent a try - it's just time factor,

being just over a 3rd lot of heavy duty abx after infx resulting from

flood in March .... and now it's mid July, feel like half year wasted.

I really am wits end with Yahoo tho,

cheers!!!

Joy

[Guest guest]

hi all,

I have not been receiving ANY posts from the group for quite a few

days ... usually there are 1 or 2 trickling thru

if I'm somehow 'cut off' - that would mean no more applicants could

be approved... gor blimey what next!!!

[Guest guest]

Joan Florida, same

Re: moderator ....

hi Liana,all of a sudden I'm not getting ANY posts from the bronch group! None at all. Several of you, such as yourself, Kay and Jaqueline post to me personally, but otherwise I feel like I've been cut off Yahoo. There is another group I see posts from, none there either. Without being able to access, I can't go online to see posts .... oh my g what next!!!THIS NOW MEANS NO NEW APPLICANTS WILL BE ABLE TO BE APPROVED!will give the instructions you sent a try - it's just time factor, being just over a 3rd lot of heavy duty abx after infx resulting from flood in March .... and now it's mid July, feel like half year wasted.I really am wits end with Yahoo tho,cheers!!!Joy

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[Guest guest]

I've had none, either - just assumed no one was posting.Sent from my iPadSuzanne R Brown

Joan Florida, same

Re: moderator ....

hi Liana,all of a sudden I'm not getting ANY posts from the bronch group! None at all. Several of you, such as yourself, Kay and Jaqueline post to me personally, but otherwise I feel like I've been cut off Yahoo. There is another group I see posts from, none there either. Without being able to access, I can't go online to see posts .... oh my g what next!!!THIS NOW MEANS NO NEW APPLICANTS WILL BE ABLE TO BE APPROVED!will give the instructions you sent a try - it's just time factor, being just over a 3rd lot of heavy duty abx after infx resulting from flood in March .... and now it's mid July, feel like half year wasted.I really am wits end with Yahoo tho,cheers!!!Joy

No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1388 / Virus Database: 1516/3751 - Release Date: 07/08/11

[Guest guest]

Same here guess no one is posting at fhe moment

Liz

Sent from my iPad

[Guest guest]

I have it set up where all new messages are sent to me as individual emails. Since I haven't received any in the last few days, I'm assuming people are busy and just not posting at the moment. I don't think this is a problem with Yahoo, Joy, so rest assured! Take your time and try the suggestions I emailed you for regaining access. If that doesn't work, then I'll try to dig up some info and try a face-to-face meeting (er, rather "pleading", lol) with the local Yahoo office here in SIlicon Valley.

~ Liana ~

Subject: Re: moderator ....To: bronchiectasis Date: Saturday, July 9, 2011, 2:30 AM

hi all,I have not been receiving ANY posts from the group for quite a few days ... usually there are 1 or 2 trickling thruif I'm somehow 'cut off' - that would mean no more applicants could be approved... gor blimey what next!!!

[Guest guest]

Where is everybody?

The Smart Vest was delivered to me ten days ago. The trainer said it could be a week or more before I start seeing good results. At 103 lbs., my body is not sure it can take this even twice a day.

Also, I made an appt with my gastro doc because the ENT doc said she couldn't help with my throat. She thought the problems are with reflux. So, my gastro doc, through a Bravo pH monitor stapled to my esophagus next Tuesday, can analyze how much GERD I'm experiencing. I've also lost weight over the last 6-8 months (at least 15 lbs.) which I hope this analysis will solve.

New Pulm doc has done three sputum cultures and has me on Ciprofloxacin for two weeks for bacterial infection. WOW. I feel I'm going through so much right now.

Subject: Re: moderator ....To: bronchiectasis Date: Saturday, July 9, 2011, 2:30 AM

hi all,I have not been receiving ANY posts from the group for quite a few days ... usually there are 1 or 2 trickling thruif I'm somehow 'cut off' - that would mean no more applicants could be approved... gor blimey what next!!!

[Guest guest]

thx all - just me panicking cos of silly yahoo problems. After

spending 1 & 1/2 hours I get a reply telling me there is no Customer

Service on the one I used (for 'help') and to go back to exactly the

one i did use in 1st place. Enough to tear hair out.

All I can see is we have to start a parallel group - someone can

maybe post something on this group to let them know that it's no

longer the active group and direct them to the new one. Is this

possible - Liz, Liana, Suzanne experts?

cheers all and good to know e'thing still working!

joy h

[Guest guest]

Liana - did try from info you sent - thx for going to so much

effort. Looks like it automatically puts you into a loop cycle once

have made a certain number of efforts to access account. All

attempts to change my password just bring me back to same loop - the

code, which then refuses to submit altho there is absolutely no

ambiguity.

I hope you may be able to talk some sense into someone with 'common-

sense' in Silicon Valley!!

cheers

joy h

[Guest guest]

hi Ann

keep your settings around 10, or 12 at highest, just try 10 minutes

initially, then work up. Keep the pressure setting low - maybe on

the 20 dial. I found it strange at first but quickly adapted. I

avoid drink / food before using no matter how hungry, it has to come

first if haven't done physio and in urgent need of. Please don't let

the initial wierdness put you off, it can really help.

I generally now do 20 - 30 mins, mostly 12 - 14 hz, @ 10 mins each,

and maybe a 5 min on 16 if feel like have stuff not shifting, needs

extra shake up. When unwell and headachey I take it easy. But as

maintenance it's great, I don't end up rattling and coughing up all

day and night like I used to.

Being on Cipro sounds like you have our wonderful friend Pseudomonas

aeruginosa (Psa - easier to write!), it's a rough one to deal with

but most of us on this site have it colonised to varying degrees. If

you start to get sunburn-like rashes tell your Dr straight away - I

suffered agony for 7 yrs on Cipro with the rashes, sometimes agony.

They stopped soon as no more Cipro. Only alternative tho is IV abx.

You may have no probs though, not everyone react to meds the same way.

hope this hasn't worried you more! You're on the right treatment,

and having the SmartVest will be the best way to keep infection right

down to a level where you don't feel unwell so much.

cheers,

joy h

[Guest guest]

>>>>> All I can see is we have to start a parallel group - someone can maybe post something on this group to let them know that it's no longer the active group and direct them to the new one. Is this possible - Liz, Liana, Suzanne experts?*

*

Nope, not unless somebody knows of a good hacker! As far as I know, since the group is moderated, the only info that new members have access to seeing is the group's "front page". In order to modify the info shown on the front page, you need to have "List Owner" status. Thus, any brand new members would be sending a message to join and never get a response or approval.

As far as members already in the group, if a parallel group is started at some point, then the only thing we could do is send out several *new* messages and from that point on simply NOT post here. This way, those mini-messages telling old members who might visit what happened will stay on the top of the message page. Not the best solution, by a long shot. The concern I have is losing any access to the wealth of info that can be found in the group's archives.

[Guest guest]

I too, am on cipro 1000 mg/day for 15 days, and yes psa. that is one of the best things about this group, knowing that you are not alone with this "thing". Joan, in Florida

Re: moderator ....

hi Annkeep your settings around 10, or 12 at highest, just try 10 minutes initially, then work up. Keep the pressure setting low - maybe on the 20 dial. I found it strange at first but quickly adapted. I avoid drink / food before using no matter how hungry, it has to come first if haven't done physio and in urgent need of. Please don't let the initial wierdness put you off, it can really help.I generally now do 20 - 30 mins, mostly 12 - 14 hz, @ 10 mins each, and maybe a 5 min on 16 if feel like have stuff not shifting, needs extra shake up. When unwell and headachey I take it easy. But as maintenance it's great, I don't end up rattling and coughing up all day and night like I used to.Being on Cipro sounds like you have our wonderful friend Pseudomonas aeruginosa (Psa - easier to write!), it's a rough one to deal with but most of us on this site have it colonised to varying degrees. If you start to get sunburn-like rashes tell your Dr straight away - I suffered agony for 7 yrs on Cipro with the rashes, sometimes agony. They stopped soon as no more Cipro. Only alternative tho is IV abx. You may have no probs though, not everyone react to meds the same way.hope this hasn't worried you more! You're on the right treatment, and having the SmartVest will be the best way to keep infection right down to a level where you don't feel unwell so much.cheers,joy h

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[Guest guest]

Hi Joan,

I had psa and pneumonia end of August and was on VFend for 8 months which I stopped in March. I felt great and then got sick in May. since then, I have been coughing and Primary Dr.. tried Cipro and levaquin with no improvement. She then sent me to the Infectious Disease Dr. who prescribed Biaxon with no improvement. Then on last Thursday my Sputum Culture came back and the nurse said it stated gram positive cocci and small mold. Dr. said to stop Biaxon and wants to see me this Thursday. I have been saving my sputum for another culture and today on two separate occasions, a small PINK pea size ball of mucus came up which is probably blood streaked. I called Dr.in the group that is on call today and he said he would try Avalox next which I have to relay to my Dr. in the group on Monday. Happily, I don't have to go to the

hospital.

On top of this, my car is leaking transmission fluid and will be picked up on Monday and taken to the dealer for repair.

EILEEN - FL

Subject: Re: moderator ....To: bronchiectasis Date: Sunday, July 10, 2011, 8:37 AM

I too, am on cipro 1000 mg/day for 15 days, and yes psa. that is one of the best things about this group, knowing that you are not alone with this "thing". Joan, in Florida

Re: moderator ....

hi Annkeep your settings around 10, or 12 at highest, just try 10 minutes initially, then work up. Keep the pressure setting low - maybe on the 20 dial. I found it strange at first but quickly adapted. I avoid drink / food before using no matter how hungry, it has to come first if haven't done physio and in urgent need of. Please don't let the initial wierdness put you off, it can really help.I generally now do 20 - 30 mins, mostly 12 - 14 hz, @ 10 mins each, and maybe a 5 min on 16 if feel like have stuff not shifting, needs extra shake up. When unwell and headachey I take it easy. But as maintenance it's great, I don't end up rattling and coughing up all day and night like I used to.Being on Cipro sounds like you have our wonderful friend Pseudomonas aeruginosa (Psa - easier to write!), it's a rough one to deal with but most of us on this site have it colonised to varying

degrees. If you start to get sunburn-like rashes tell your Dr straight away - I suffered agony for 7 yrs on Cipro with the rashes, sometimes agony. They stopped soon as no more Cipro. Only alternative tho is IV abx. You may have no probs though, not everyone react to meds the same way.hope this hasn't worried you more! You're on the right treatment, and having the SmartVest will be the best way to keep infection right down to a level where you don't feel unwell so much.cheers,joy h

No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1388 / Virus Database: 1516/3754 - Release Date: 07/09/11

[Guest guest]

Joy H, thanks for your encouraging comments. Your advice is invaluable.

Suzanne Brown, Dr. R has stayed on top of my bronch from first visit. So much more than my previous Pulm doc.

I think I'm closer to being on mannitol trial. They needed print out of abx meds subscribed in the last 2 - 4 yrs. The two pharmacies I use have been cooperative and I sent on to study on Friday. I should hear from them soon. It's a double-blind study but hope I get the product and it's most helpful to us.

Subject: Re: moderator ....To: bronchiectasis Date: Sunday, July 10, 2011, 8:37 AM

I too, am on cipro 1000 mg/day for 15 days, and yes psa. that is one of the best things about this group, knowing that you are not alone with this "thing". Joan, in Florida

Re: moderator ....

hi Annkeep your settings around 10, or 12 at highest, just try 10 minutes initially, then work up. Keep the pressure setting low - maybe on the 20 dial. I found it strange at first but quickly adapted. I avoid drink / food before using no matter how hungry, it has to come first if haven't done physio and in urgent need of. Please don't let the initial wierdness put you off, it can really help.I generally now do 20 - 30 mins, mostly 12 - 14 hz, @ 10 mins each, and maybe a 5 min on 16 if feel like have stuff not shifting, needs extra shake up. When unwell and headachey I take it easy. But as maintenance it's great, I don't end up rattling and coughing up all day and night like I used to.Being on Cipro sounds like you have our wonderful friend Pseudomonas aeruginosa (Psa - easier to write!), it's a rough one to deal with but most of us on this site have it colonised to varying

degrees. If you start to get sunburn-like rashes tell your Dr straight away - I suffered agony for 7 yrs on Cipro with the rashes, sometimes agony. They stopped soon as no more Cipro. Only alternative tho is IV abx. You may have no probs though, not everyone react to meds the same way.hope this hasn't worried you more! You're on the right treatment, and having the SmartVest will be the best way to keep infection right down to a level where you don't feel unwell so much.cheers,joy h

No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1388 / Virus Database: 1516/3754 - Release Date: 07/09/11

[Guest guest]



rains, pours.

Re: moderator ....

hi Annkeep your settings around 10, or 12 at highest, just try 10 minutes initially, then work up. Keep the pressure setting low - maybe on the 20 dial. I found it strange at first but quickly adapted. I avoid drink / food before using no matter how hungry, it has to come first if haven't done physio and in urgent need of. Please don't let the initial wierdness put you off, it can really help.I generally now do 20 - 30 mins, mostly 12 - 14 hz, @ 10 mins each, and maybe a 5 min on 16 if feel like have stuff not shifting, needs extra shake up. When unwell and headachey I take it easy. But as maintenance it's great, I don't end up rattling and coughing up all day and night like I used to.Being on Cipro sounds like you have our wonderful friend Pseudomonas aeruginosa (Psa - easier to write!), it's a rough one to deal with but most of us on this site have it colonised to varying degrees. If you start to get sunburn-like rashes tell your Dr straight away - I suffered agony for 7 yrs on Cipro with the rashes, sometimes agony. They stopped soon as no more Cipro. Only alternative tho is IV abx. You may have no probs though, not everyone react to meds the same way.hope this hasn't worried you more! You're on the right treatment, and having the SmartVest will be the best way to keep infection right down to a level where you don't feel unwell so much.cheers,joy h

No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1388 / Virus Database: 1516/3754 - Release Date: 07/09/11

No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1388 / Virus Database: 1516/3756 - Release Date: 07/10/11