Re: Sandy and everyone

[Guest guest]

My other question is how do you know if you have a lung infection?

Good Morning..

Other than curing or getting a handle on our bronchiactasis, there really isnt any way of controlling our mucous, other than what you're already doing to keep it thinned.

As far as infections go, I could write a book on that. I have frequent, consistent infections and I always know when I'm getting one. My normal temp is a consistent 97.6. If my temp goes up to 98 or so, I know one is brewing. Also, I can feel it stirring in my chest. My cough is different..I feel a burning in my lungs. I'm more SOB. If I wait a day too long I'm cursed with excrutiating body aches..my fingernails even hurt. Also..as soon as I notice a change in my sputum color, as much as a tinge of yellow w/in a 24 hour period..I start my anti's IMMEDIATELY..it doesn't take long for that infection to manifest into pnuemonia..at least in my case.

For that reason I'm blessed to have a dr that allows me to keep anti's on hand..and I always do.

Sandie

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

You are lucky to have it so under control. I am taking antis continuously,3 days per week, alternating weekly with two different ones. I see thataround two days or so without them the mucous starts to turn yellow. Itjust seems an infection is inevitable without the meds.

Marsha... I only WISH I had it under control. Without anti's I'm in the same boat you are..is there EVER any end to this? I too, am so sick of being sick..

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

You are lucky to have it so under control. I am taking antis continuously,

3 days per week, alternating weekly with two different ones. I see that

around two days or so without them the mucous starts to turn yellow. It

just seems an infection is inevitable without the meds.

Last year, before I was diagnosed, I had pneumonia three times and always

felt under the weather. I am feeling better since my diagnosis and antis

but the coughing is still a terrible burden and an embarrassment.

Marsha

[Guest guest]

The coughing, he tells me, is good in that it brings up what the lungs can no longer do on their own. Small comfort, right?

yeap..but it's true..if I stopped coughing I think I would worry about what was piling up and stuck in there..

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

Sandy,

I don't think there is. My doctor told me it is an anatomical change in the

lung and does not go away. All that is left for us is to learn to manage it as

well as we can. The coughing, he tells me, is good in that it brings up what

the lungs can no longer do on their own. Small comfort, right?

Marsha

[Guest guest]

Sandy & all,

Your symptoms are so very similar to what

I encounter. Once I start getting that temp, which can come on in the

snap of a finger, I know what is happening. I do not wait to start talking

antibiotics. Thankfully, my pulm specialist is good about calling in prescription

for me. If I don’t get better within a few days he would require that

I come in and possible x-rays. My infection ALWAYS turns to bacterial

pneumonia.

From:

bronchiectasis [mailto:bronchiectasis ] On Behalf Of Sunniesback55@...

Sent: Monday, October 09, 2006

3:10 AM

To: bronchiectasis

Subject: Re: Sandy and everyone

In

a message dated 10/8/2006 6:15:57 P.M. Eastern Standard Time,

imbeez@... writes:

My other question is how do you know if

you have a lung infection?

Good

Morning..

Other

than curing or getting a handle on our bronchiactasis, there really isnt any

way of controlling our mucous, other than what you're already doing to keep it

thinned.

As

far as infections go, I could write a book on that. I have frequent, consistent

infections and I always know when I'm getting one. My normal temp is a consistent

97.6. If my temp goes up to 98 or so, I know one is brewing. Also, I can feel

it stirring in my chest. My cough is different..I feel a burning in my lungs.

I'm more SOB. If I wait a day too long I'm cursed with excrutiating body

aches..my fingernails even hurt. Also..as soon as I notice a change in my

sputum color, as much as a tinge of yellow w/in a 24 hour period..I start my

anti's IMMEDIATELY..it doesn't take long for that infection to manifest into

pnuemonia..at least in my case.

For

that reason I'm blessed to have a dr that allows me to keep anti's on hand..and

I always do.

Sandie

Never

Look Down on Someone

Unless You're Gonna Help Them Up

[Guest guest]

Hi there, it is me, Janet. Haven't written in a few days because of

course I have been sick once again with a bad infection. I am new

at this having been diagnosed just months ago. I have outdone Cipro

[on it over a month 750 mg 2x a day] so now the pulmonary doc has me

on Antigen but after a week of this I am still coughing up so much

mucus, it is embarrassing when I'm out and about, that it too

doesn't seem to work. I asked the pharmasist and was told that yes

indeed I can become resistent and hopefully more antibiotics will

be " invented " to keep up with my numerous infections! Like you, I

get the fever, a slight spike in temp, wheezing lungs like they are

crackling which is hard to sleep with, then very light phlyem which

graduates to thick green when I begin the antibiotics. Probably too

late, huh? I have a saltpipe, yeah, which actually has helped sooth

the chest and does increase the phylem actually plus I have an

Acapella flutter valve and my dear husband who pounds my back

nightly! My question is, how long do you guys go between " flareup

attacks " as I call them??? It seems I can only go 2-3 weeks. I

have been told by a couple of GP doctors that this is a progressive

disease with not much hope of a good outcome, yikes! Has my

lifespan been shortened? I have the widening of the bronchi tubes

in most of the lobes of my lungs so it is pretty advanced already

which is amazing since I was only diagnosed about 6 months ago! So

no lung transplant for me.

Sorry, I just feel sorry for myself right now ... I also have heart

disease and diabetes and feel lousy!

Janet

>

> Sandy & all,

>

>

>

> Your symptoms are so very similar to what I encounter. Once I

start

> getting that temp, which can come on in the snap of a finger, I

know

> what is happening. I do not wait to start talking antibiotics.

> Thankfully, my pulm specialist is good about calling in

prescription for

> me. If I don't get better within a few days he would require that

I

> come in and possible x-rays. My infection ALWAYS turns to

bacterial

> pneumonia.

>

>

>

> ________________________________

>

> From: bronchiectasis

> [mailto:bronchiectasis ] On Behalf Of

> Sunniesback55@...

> Sent: Monday, October 09, 2006 3:10 AM

> To: bronchiectasis

> Subject: Re: Sandy and everyone

>

>

>

> In a message dated 10/8/2006 6:15:57 P.M. Eastern Standard Time,

> imbeez@... writes:

>

> My other question is how do you know if you have a lung

> infection?

>

> Good Morning..

>

>

>

> Other than curing or getting a handle on our bronchiactasis, there

> really isnt any way of controlling our mucous, other than what

you're

> already doing to keep it thinned.

>

>

>

> As far as infections go, I could write a book on that. I have

frequent,

> consistent infections and I always know when I'm getting one. My

normal

> temp is a consistent 97.6. If my temp goes up to 98 or so, I know

one is

> brewing. Also, I can feel it stirring in my chest. My cough is

> different..I feel a burning in my lungs. I'm more SOB. If I wait a

day

> too long I'm cursed with excrutiating body aches..my fingernails

even

> hurt. Also..as soon as I notice a change in my sputum color, as

much as

> a tinge of yellow w/in a 24 hour period..I start my anti's

> IMMEDIATELY..it doesn't take long for that infection to manifest

into

> pnuemonia..at least in my case.

>

> For that reason I'm blessed to have a dr that allows me to keep

anti's

> on hand..and I always do.

>

> Sandie

>

>

>

> Never Look Down on Someone

> Unless You're Gonna Help Them Up

>

[Guest guest]

You are saying coughing is a symptom and yellow or green.

Last year when I was really sick it was green and it hurt when I

coughed. I never had a fever.

I get that sick feeling and sweat, but at my age that could be maybe

be a hot flash.

I don't really cough much. I keep clearing my throat and I see yellow.

It mostly feels like I need to cough and that something is stuck

somewhere. I wish I could cough it up. I have problems with build up

in my sinuses, also I am trying to control both.

It is really nice to be able to discuss this with someone!!

I am so glad to be a part of this group.

I cancelled my ENT appt. for Wednesday and re-scheduled for the 25th.

I want to see how I do without antibiotics. I guess I will continue

with the Zyrtec D and Mucinex for now unless someone knows of a

better way. I don't think the Zyrtec D is good for my blood pressure.

November is when I get my next CT Scan and see the pulmonary Dr.

When I researched online, I read that a lot of infections are not

bacterial. Is there a way that a doctor can tell?

Does everyone get a flu shot?

Barbara

[Guest guest]

Yes, a flu shot and a pneumonia shot every 5 years. I just got my first

pneumonia shot.

Postural drainage helps me a lot. You can find out all about it on the

Internet. I clear out my chest every evening doing it and I feel like a new

person afterwards. You don't need any equipment except a box of tissues.

Marsha

[Guest guest]

You are saying coughing is a symptom and yellow or green.Last year when I was really sick it was green and it hurt when Icoughed. I never had a fever. I get that sick feeling and sweat, but at my age that could be maybebe a hot flash.I don't really cough much. I keep clearing my throat and I see yellow.It mostly feels like I need to cough and that something is stucksomewhere. I wish I could cough it up. I have problems with build upin my sinuses, also I am trying to control both.It is really nice to be able to discuss this with someone!! I am so glad to be a part of this group.I cancelled my ENT appt. for Wednesday and re-scheduled for the 25th.I want to see how I do without antibiotics. I guess I will continuewith the Zyrtec D and Mucinex for now unless someone knows of abetter way. I don't think the Zyrtec D is good for my blood pressure.November is when I get my next CT Scan and see the pulmonary Dr.When I researched online, I read that a lot of infections are notbacterial. Is there a way that a doctor can tell?Does everyone get a flu shot?Barbara

Hi Barb..Yes..and you should too!! With our lungs being so sick and comprimised, a bout of the flu could land us flat on our back in the hospital and on a vent. You need to get a pneumovac as well. I'm surprised your dr hasnt suggested these things to you.

Upon first signs of an infection, honestly, I can taste it..smell it in the back of my throat. Upon the FIRST SIGN of discolored sputum I'm hitting my anti bottle PRONTO. I've learned all too well what waiting to see if it develops any further does to me. Lordy..I'm hurting down to my fingernails..WEAKER than a kitten..very very painful body aches, chills and fever. I don't know what your experiences are with infection but I know from 6 years of past exp it's nothing to play with and I dont play the wait and see game anymore..for me that could be deadly.

Best to you Barb

Sandie MD

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

I dont know why, but this didn't go thru the first time..scroll down and thanks

Never Look Down on SomeoneUnless You're Gonna Help Them Up

I am on maintenance meds. But I don't know what you mean by flare ups as Iam pretty much the same all the time. I have about 2 "attacks" a day whereI cough my head off and get rid of much mucous. Aside from that there isalways coughing going on but not like when I have the attacks. Some days Ifeel better than others but that's it. I take Erythromycin, 250 mg, 3 days(Mon, Wed, Fri) a week; the following week I take Doxycycline, 100 mg. 3days. The following week back to Erith. That seems to be preventing me fromgetting sick.

Thanks for the response, Marsha.

By flareups I mean infections..those ever so pesty, horrible infections some of us get, back to back.

I would think, w/maintenance meds, you wouldn't have infections, as you're always on anti's..so as bad as it is to be consistently ingesting meds, at least the meds keep you from getting sick. How does this constant ingestion of meds affect your GI tract?

I remember a few years back, my dr had me on maintenance. I took Doxcycline as well. I hate that med. Don't you always have this nasty taste in your mouth? That med was always making me burp and <excuse me> fart.

I've heard some do zythro? My GP suggested Cipro..mannn alll these dif meds are making my head spin..

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

Hi Sandie,

I'm the same way. Hip pain is often in my case an

early warning of impending lung infection. My hips

can hurt so badly that it’s difficult and painful for

me to walk and they become stiff. My hands also ache

terribly. Often I also get a salty taste in my mouth

just prior to an infection, my sinuses can also ache a

few days before, and my tempt starts to shot up

quickly. My ID specialist tells me never to wait to

get on antibiotics. He says that a doctor must see me

immediately. I did wait once when I was 20-years-old

and ended up in the ICU in respiratory failure and on

100% 02. My ID specialist has only been angry with me

once and that was when he heard that I had waited too

long. Lesson learned! I've since been almost

intubated despite starting antibiotics early. These

infections and our lungs are tricky.

My doctors also advise on getting the flu and

pneumonia shots. I receive the flu shot yearly.

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

) " Miracles happen with love..... " ..... Please support your local children's

hospital.... and " Give with all your might! "

http://iwkfoundation.org/

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

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

~Doris ~

__________________________________________________

[Guest guest]

and others,

Interesting how your hips ache, etc. prior to onset of infection. Has

there been any relationship as to why this occurring from your doctor?

I am feeling pretty blessed that I am not to the stage many of the group

is at. I too have been told to not wait if I start getting a temp and

know if I wait....thinking I my body can heal itself on its own, I pay

the price. I worry about becoming immune to the antibiotics too. I

take them only at flare-ups. I threw away my inhaler (Q-Var 80) since I

continue to get ill, why put the stuff in my body. Intubation is a

scary thing. I have been getting the flu shots for years and the pneumo

vax every 5 years. Years ago, I was told the pneumonia vaccination

would cover me for life, but later my specialist said that all depends

on your age. Unfortunately, I still get the bronchial pneumonia every

time I get a flare up. I can't say that I actually ever get the flu,

but to minimize that opportunity, I get the annual shot. I wish you the

best to stay well.

Re: Sandy and everyone

Hi Sandie,

I'm the same way. Hip pain is often in my case an

early warning of impending lung infection. My hips

can hurt so badly that it's difficult and painful for

me to walk and they become stiff. My hands also ache

terribly. Often I also get a salty taste in my mouth

just prior to an infection, my sinuses can also ache a

few days before, and my tempt starts to shot up

quickly. My ID specialist tells me never to wait to

get on antibiotics. He says that a doctor must see me

immediately. I did wait once when I was 20-years-old

and ended up in the ICU in respiratory failure and on

100% 02. My ID specialist has only been angry with me

once and that was when he heard that I had waited too

long. Lesson learned! I've since been almost

intubated despite starting antibiotics early. These

infections and our lungs are tricky.

My doctors also advise on getting the flu and

pneumonia shots. I receive the flu shot yearly.

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

) " Miracles happen with love..... " ..... Please support your local

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

http://iwkfoundation.org/

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

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

~Doris ~

__________________________________________________