new

[Guest guest]

Unfortunately, if you have Bronchiectasis, coughing is the name of the game and nothing will eliminate it completely but I have found I cough less when the infection is under control.

I too, cough less, when the infection is under control. Yet since the day I started this bronchiactasis crap I've always had to bring mucous up..the more we can get out of our lungs and bronchi the less chance there is for infection to begin with..and we breathe freer

Sandie in MD

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

[Guest guest]

Hello Ron

I too have bronc. it is just barely controllable.. The Dr. about 5 years ago when I was at worst was given the acetylcistine to put in the albuterol in the nebulizer. The doctor said to do NOT over do the acetylcistine as it is really strong medication. Didn't use any more than necessary............Have had 1/3 lung removed in the 60's but it has gotten much worse over the years. It isn't something pleasant to deal with. Have used many antibiotics and year ago had bronchoscope done and will go for C scan next month.

I try not to let it get to me mentally but I live alone so my barking with cough up isn't as embarassing. Sometimes,huge quantities and other times a little but I have to avoid ALL irritants at all cost.

Use Combivent, Advair, Singulair but they help a little.

Al

[Guest guest]

Ron,

The idea is to cough and take deep breaths in order to bring up mucous. I would

guess that's the point of your inhaler.

As for medication, I was diagonosed about 6 months ago and have been taking

antibiotics as a preventative (Erythmcin, Doxyclin) and they have prevented

infections. I take one for 3 days a week and switch to the other for 3 days a

week and then back to the first one and so on.

Unfortunately, if you have Bronchiectasis, coughing is the name of the game and

nothing will eliminate it completely but I have found I cough less when the

infection is under control.

Marsha/NYC

[Guest guest]

You are so right.

The doctor who diagnosed mine explained why the mucous collects and it made

sense. The little hairs (celia) in the lungs that sweep the lungs clean no

longer function in the area of the lungs where we have this affliction. There

is actually an anatomical change in the lungs in those areas and it will never

be normal. So, the mucous that would ordinarily be cleaned and swept up and out

by these celia just sits there in puddles. And that is the mucous we are

coughing up all the time. If it sits there bacteria grow and we get

infections. So coughing is a good think although an pretty rotten thing to

have to live with.

A friend invited me to go away with her on vacation but I can't imagine imposing

my coughing and worse yet, my postural drainage sounds on her every evening.

Marsha

[Guest guest]

Hi all.My mother was diagnosised with brochiectsis about a year and a half ago and I have done some searching on the internet and have been lucky enough to find this website for support. My mother is not computer savvy, so I do the support group for her. Basically, my mom's symptoms are a chronic cough and it turns into bronchitis and on occasion pneumonia. She's had pneumonia a lot, which is the cause of her developing bronchiectasis.

Anyway, my sister-in-law is very ignorant/unknowledgeable about bronchiectasis and has kept my nephew, her grandchild, away from my mother for fear of her being contagious. Needless to say this breaks my mothers heart not to be able to see her grandson. Can anyone help me out with some literature or a fact sheet to give to my sister-in-law to prove undoubtedly that this illness is not contagious. Honestly, I would be happy never to see her again, but for my mother's sake I have to do something and she's not willing to do any research herself.

I tried to do a search for you and this is one article I came up with..

http://www.childrenfirst.nhs.uk/teens/health/real_stories/archive/b/bronchiectasis_rachel.html

Tell your sister to relax and allow her children to see their grandmother. Bronchiectasis IS NOT contagious..however..the stress she's putting on your mother by denying her the right to see her grandchildren could excasberbate her already comprimised immune system causing more stress on her already sick lungs..causing her to flare up..

Your mother's grandchildren are actually more of a threat and risk to her than she is to them..10 fold..having a comprimised immune system due to the bronch ..she could catch something from them before they even know they've been exposed !

Sandie in MD

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

[Guest guest]

Hi all.My mother was diagnosised with brochiectsis about a year and a half ago and I have done some searching on the internet and have been lucky enough to find this website for support. My mother is not computer savvy, so I do the support group for her. Basically, my mom's symptoms are a chronic cough and it turns into bronchitis and on occasion pneumonia. She's had pneumonia a lot, which is the cause of her developing bronchiectasis.

Anyway, my sister-in-law is very ignorant/unknowledgeable about bronchiectasis and has kept my nephew, her grandchild, away from my mother for fear of her being contagious. Needless to say this breaks my mothers heart not to be able to see her grandson. Can anyone help me out with some literature or a fact sheet to give to my sister-in-law to prove undoubtedly that this illness is not contagious. Honestly, I would be happy never to see her again, but for my mother's sake I have to do something and she's not willing to do any research herself.

Thank you for your help and I hope everyone has a happy and healthy holiday.

Share your latest news with your friends with the Windows Live Spaces friends module.

[Guest guest]

Thank you so much for your help. I will pass this information on to my sister-in-law and hope that it helps. The good news for my mother is that I have three children who get to see her all the time.

From: Sunniesback55@...Reply-To: bronchiectasis To: bronchiectasis Subject: Re: newDate: Mon, 18 Dec 2006 15:15:16 EST

Hi all.My mother was diagnosised with brochiectsis about a year and a half ago and I have done some searching on the internet and have been lucky enough to find this website for support. My mother is not computer savvy, so I do the support group for her. Basically, my mom's symptoms are a chronic cough and it turns into bronchitis and on occasion pneumonia. She's had pneumonia a lot, which is the cause of her developing bronchiectasis.

Anyway, my sister-in-law is very ignorant/unknowledgeable about bronchiectasis and has kept my nephew, her grandchild, away from my mother for fear of her being contagious. Needless to say this breaks my mothers heart not to be able to see her grandson. Can anyone help me out with some literature or a fact sheet to give to my sister-in-law to prove undoubtedly that this illness is not contagious. Honestly, I would be happy never to see her again, but for my mother's sake I have to do something and she's not willing to do any research herself.

I tried to do a search for you and this is one article I came up with..

http://www.childrenfirst.nhs.uk/teens/health/real_stories/archive/b/bronchiectasis_rachel.html

Tell your sister to relax and allow her children to see their grandmother. Bronchiectasis IS NOT contagious..however..the stress she's putting on your mother by denying her the right to see her grandchildren could excasberbate her already comprimised immune system causing more stress on her already sick lungs..causing her to flare up..

Your mother's grandchildren are actually more of a threat and risk to her than she is to them..10 fold..having a comprimised immune system due to the bronch ..she could catch something from them before they even know they've been exposed !

Sandie in MD

Never Look Down on SomeoneUnless You're Gonna Help Them Up><< sunnie.jpg >>

Experience the magic of the holidays. Talk to Santa on Messenger.

[Guest guest]

Hey Ron-

Unfortunately previous posters are correct. You MUST cough to get the

mucus up. My son (14 with bronchx) tells me that when he does his

breathing exercises (with the flutter) he feels he has control of the

cough for a change becuase he's making himself cough. We do albuterol

before the exercises to loosen the mucus. We try a new drug,

pulmozyme, as soon as it arrives from mail order pharmacy which will

supposedly loosen even more. I thought this " I'm in control of the

cough " attitude was interesting coming from a 14 year old.

Everyone else that's been following , his " vest " arrived today.

The darn thing is so expensive we're practically afraid to turn it on!

We'll watch the DVD tonight and wait for the respitory therapist to

come over and show us how to use. How do you determine which settings

to use? or do you just go with what the doc or therapist tells you to??

Thanks in advance for all your good advice!

Ellen

[Guest guest]

Dear Ellen, Thank you for the update. your son is smart kid, Its true we must cough it up. If this stuff was money I'd be a millionaire. ) I hope the vest works great. Please keep us updated. Has the pulmozyme been helpful? It sometimes takes a while to work. Do not be discouraged if it has not yet kicked in. Best Wishes:0) Liz Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you! ) carepages.com name: maryelizabethholt Please watch Live Life The Give Life! -

UK http://www.youtube.com/watch?v=Nz33i6prkuQ. "Don't take your organs to Heaven, heaven knows we need them here." __________________________________________________

[Guest guest]

I agree with Sandie. Its so sad that children would be kept away from their grandma, because of her bronchiectasis and fears of your sister-in-law. I never knew my biological grandparents. Three had passed away before I was born and my dad's mother died when I was two-years-old, so although, I did meet her I do not remember grandma Holt. I've always regretted not having the special relationship and bond that children have with their grandparents. A couple, friends of my parents did adopt me as their granddaughter. This was a special bond and I miss them terribly. Both died when I was only 14-years-old, however I’ll always be grateful to Nanny and Grampie . They will always be my special angles, as are my biological grandparents. Please tell your sister-in-law to allow grandma to see her sweet grandchildren They "need" their grandparents. I feel sad for children that

miss out on having a grandma and grandpa. Its Christmas after all and Christmas is about family and friends, faith (for Believers), love and helping one another (Actually, we should be doing this year round!) Speaking of which adopt a senior or younger adult at a nursing home. My mom’s in a home and I’m adopting a resident for Christmas - will put a package together. Some of these special people receive little to no visitors and its sad, although he homes I think at least in our area do provide gifts for everyone. I think its nice to make someone feel special for a day and everyone likes to be remembered. Merry Christmas Hugs:0) LizPre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you! ) carepages.com name: maryelizabethholt Please watch Live Life The Give Life! - UK http://www.youtube.com/watch?v=Nz33i6prkuQ. "Don't take your organs to Heaven, heaven knows we need them here." __________________________________________________

[Guest guest]

I am female, 62, I have bronchiectasis. A year ago I had a

bronchoscopy. The biopsy showed streptococcus peneumonia bacterium, I

knew how to spell it properly last year, LOL. I have been on

antibiotics three times since, no more bronchoscopys, I have no idea

whether this Strep.P. bacteria is or isn't contagious. I don't cough

when my son comes for a visit. I avoided visiting a friend's newborn

grandchild.

Karin

[Guest guest]

, I like your idea about taking gifts to those in nursing homes at Christmas and holidays. Some do not have family to share Christmas with. When my youngest son was about two to three years old, I went to a nursing home near my home and took treats and was in charge of the bingo games once a month. This was sponsored by my church. I often took my youngest son, who was a beautiful child, with me. So many people thought he was a girl as he was so pretty. I had a hard time getting the residents of the nursing home to play bingo. All they wanted to do was to hug my son. I finally decided that was more important for them than playing bingo. Now that I have bronchiectasis my pulmonary doctor does not want me to go to nursing homes or hospitals to visit anyone as he does not want me exposed to germs. Thanks for sharing this wonderful

thought. Norma Holt wrote: I agree with Sandie. Its so sad that children would be kept away from their grandma, because of her bronchiectasis and fears of your sister-in-law. I never knew my biological grandparents. Three had passed away before I was born and my dad's mother died when I was two-years-old, so although, I did meet her I do not remember grandma Holt. I've always regretted not having the special relationship and bond that children have with their

grandparents. A couple, friends of my parents did adopt me as their granddaughter. This was a special bond and I miss them terribly. Both died when I was only 14-years-old, however I’ll always be grateful to Nanny and Grampie . They will always be my special angles, as are my biological grandparents. Please tell your sister-in-law to allow grandma to see her sweet grandchildren They "need" their grandparents. I feel sad for children that miss out on having a grandma and grandpa. Its Christmas after all and Christmas is about family and friends, faith (for Believers), love and helping one another (Actually, we should be doing this year round!) Speaking of which adopt a senior or younger adult at a nursing home. My mom’s in a home and I’m adopting a resident for Christmas - will put a package together. Some of these special people

receive little to no visitors and its sad, although he homes I think at least in our area do provide gifts for everyone. I think its nice to make someone feel special for a day and everyone likes to be remembered. Merry Christmas Hugs:0) Liz Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you! ) carepages.com name: maryelizabethholt Please watch Live Life The Give Life! - UK http://www.youtube.com/watch?v=Nz33i6prkuQ. "Don't take your organs to Heaven, heaven knows we need them here." __________________________________________________

[Guest guest]

Ellen, When I got the vest about three years ago, the respiratory therapist from the childrens' hospital brought it along with a prescription from my pulmonary doctor for the settings. I hope it works as well for your son as it has for me. Normardprice64 wrote: Hey Ron- Unfortunately previous posters are correct. You MUST cough to get the mucus up. My son (14 with bronchx) tells me that when he does his

breathing exercises (with the flutter) he feels he has control of the cough for a change becuase he's making himself cough. We do albuterol before the exercises to loosen the mucus. We try a new drug, pulmozyme, as soon as it arrives from mail order pharmacy which will supposedly loosen even more. I thought this "I'm in control of the cough" attitude was interesting coming from a 14 year old.Everyone else that's been following , his "vest" arrived today. The darn thing is so expensive we're practically afraid to turn it on! We'll watch the DVD tonight and wait for the respitory therapist to come over and show us how to use. How do you determine which settings to use? or do you just go with what the doc or therapist tells you to??Thanks in advance for all your good advice!Ellen

[Guest guest]

Family is important. We're ill..our lives have changed dramatically. We've been through enough and are going through enough. People need to be sensitive and compassionate and understanding about our emotional instability i.e., depression from all the changes.

Just remember .. as important as it is for your mother to have that contact with your children, you or anyone else, for that matter, to also be considerate about her weakened immune system and please be vigilant about protecting her from exposure when you or your children are sick..even a runny nose..or have been exposed to someone else who has been sick. That can reek havoc for your mom's sensitive condition.

Best Wishes

Sandie

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

[Guest guest]

Has the pulmozyme been helpful? It sometimes takes a while to work. Do not be discouraged if it has not yet kicked in.

Guafisen's also another good one and it's not that expensive..though you need a script for it. Also, there's OTC meds that help as well, if you can't get a script..

Sandie in MD

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

[Guest guest]

How do you determine which settings to use? or do you just go with what the doc or therapist tells you to??

Your therapist will guide you through all that. The vest is great..have him drink water while using it..it will feel funny to him at first..all that shaking up that we feel, sort've like a milk shake..but it won't hurt him..it'll loosen that junk and the water he drinks will help it flow out..Sandie in MD

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

[Guest guest]

I am female, 62, I have bronchiectasis. A year ago I had abronchoscopy. The biopsy showed streptococcus peneumonia bacterium, Iknew how to spell it properly last year, LOL. I have been onantibiotics three times since, no more bronchoscopys, I have no ideawhether this Strep.P. bacteria is or isn't contagious. I don't coughwhen my son comes for a visit. I avoided visiting a friend's newborngrandchild.

In the event that you feel uncomfortable exposing others..there's always a mask..the mask can protect YOU as well as you confining your germs to anyone else..it's used frequently ..you can get them OTC at your phamacist or ask your dr or visiting home health care nurse.

Sandie in MD

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

[Guest guest]

I live in Toronto, Canada, we had quite a number of deaths due to theSARS outbreak in 2003. Masks don't always work. Nurses wearimg maskseither transferred the SARS or got it, some died. The N94 is o.k. buthasn't proven to work 100%.

Well THAT's disheartening! I'm better at giving out advice than following my own..I never liked the masks myself..I found it harder to breathe..but it didnt seem to bother some folks..so what other methods of prevention, short of becoming a hermit <which I do> is there?

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

[Guest guest]

I live in Toronto, Canada, we had quite a number of deaths due to the

SARS outbreak in 2003. Masks don't always work. Nurses wearimg masks

either transferred the SARS or got it, some died. The N94 is o.k. but

hasn't proven to work 100%.

karin

>

>

>

>

>

> In a message dated 12/18/2006 8:13:31 PM Eastern Standard Time,

> karin_44@... writes:

>

>

>

>

> I am female, 62, I have bronchiectasis. A year ago I had a

> bronchoscopy. The biopsy showed streptococcus peneumonia bacterium, I

> knew how to spell it properly last year, LOL. I have been on

> antibiotics three times since, no more bronchoscopys, I have no idea

> whether this Strep.P. bacteria is or isn't contagious. I don't cough

> when my son comes for a visit. I avoided visiting a friend's newborn

> grandchild.

>

>

>

>

>

> In the event that you feel uncomfortable exposing others..there's

always a

> mask..the mask can protect YOU as well as you confining your germs

to anyone

> else..it's used frequently ..you can get them OTC at your phamacist

or ask

> your dr or visiting home health care nurse.

> Sandie in MD

>

>

> Never Look Down on Someone

> Unless You're Gonna Help Them Up

>

[Guest guest]

In between hand washing I take purell everywhere. Its attached to my 02 tank (small bottle) and in my purse. Sometimes, I even carry a small bottle in my coat pocket. Normally, I am able to avoid colds, and I think its my hand washing that pays off. My infectious disease specialist once told me not to live in a bottle. he encouraged me to get out in the public and just have fun. My immune system is completely normal - have had tons of immune tests through Sick Kids Hospital in Toronto. I generally do not wear a mask even to the mall, but sometimes do in hospital. If the flu and other viruses are going around I do try to avoid going to high public areas (malls, etc), but still like to get out. If you have a doctors appointment in hospital and want to avoid busy waiting rooms the hospital/doctors receptionist can page you for the appointment.

Post-transplant I'll need to take many more precautions and will wear masks (at least for awhile), continue with my hand washing, and avoid the malls and other areas during peak times, because after a transplant one is immunosuppressed, so I'm trying ot live it up now!

exactly and that's what I do..avoid during high peak times..we cant isolate ourselves in a bottle, but prevention and precaution are key..we know when the times right to trip the light fantastic and when to cool our heels..

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

[Guest guest]

In between hand washing I take purell everywhere. Its attached to my 02 tank (small bottle) and in my purse. Sometimes, I even carry a small bottle in my coat pocket. Normally, I am able to avoid colds, and I think its my hand washing that pays off. My infectious disease specialist once told me not to live in a bottle. he encouraged me to get out in the public and just have fun. My immune system is completely normal - have had tons of immune tests through Sick Kids Hospital in Toronto. I generally do not wear a mask even to the mall, but sometimes do in hospital. If the flu and other viruses are going around I do try to avoid going to high public areas (malls, etc), but still like to get out. If you have a doctors appointment in hospital and want to avoid busy waiting rooms the hospital/doctors receptionist can page you for the appointment. Post-transplant I'll need to take many more precautions and will wear masks (at least for

awhile), continue with my hand washing, and avoid the malls and other areas during peak times, because after a transplant one is immunosuppressed, so I'm trying ot live it up now! Hugs:0) LizPre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you! ) carepages.com name: maryelizabethholt Please watch: Live Life Then Give Life! - UK http://www.youtube.com/watch?v=Nz33i6prkuQ. "Don't take your organs to Heaven, heaven knows we need them here." __________________________________________________

[Guest guest]

Hi just caught up with this thread, I have been in hospital.

It is appalling that your mum's SIL is so insensitive...I can

guarantee that the kids are more of a danger to her than she is to

them. Her immune system is the problem and the bugs she gets will not

invade healthy tissue.

I have raised two children and have four grandkids and I can tell you

that I never gave them a cold it was always the other way around.

Perhaps a letter from your Mum's doctor would help. In the

meantime,she should persist by keeping in touch over the phone and

with cards or letters. Hope this helps.

Cheers Carole.

[Guest guest]

You are right , it is much better when I weaken it with albuterolThanksRonallang88@... wrote: Hello Ron I too have bronc. it is just barely controllable.. The Dr. about 5 years ago when I was at worst was given the acetylcistine to put in the albuterol in the nebulizer. The doctor said to do NOT over do the acetylcistine as it is really strong medication. Didn't

use any more than necessary............Have had 1/3 lung removed in the 60's but it has gotten much worse over the years. It isn't something pleasant to deal with. Have used many antibiotics and year ago had bronchoscope done and will go for C scan next month. I try not to let it get to me mentally but I live alone so my barking with cough up isn't as embarassing. Sometimes,huge quantities and other times a little but I have to avoid ALL irritants at all cost. Use Combivent, Advair, Singulair but they help a little. Al