Re: Need Help

[Guest guest]

I'm 19, recently diagnosed with Bronchiectasis. I have to do millions of exams and tests, I was tested for Cystic Fibrosis too. I was told that my lungs look worst than a person who has been smoking for years. I might surgery to remove a portion of my lung or an entire transplant. Thats the option if I continue to get worst and not respond well to medicine. I had to leave school and quit my job because simple things have become extremely hard to do. I had to get a biopsy for a mass in my nose. Its like I try to live normal and try to push myself. But ends up with me not being able to breathe and in the hospital. I don't know how to handle this anymore, no matter how many treatments or exams, I can't seem to get any better, any advice?

Hi Marie..you're so young to have to go through all this, I'm sorry.

What part of the world do you live in?

What kind of treatments are you receiving?

I'm going to send you a link to begin your journey on the path of bronchiectasis..read it..take notes and come back to the list with your questions. There's so much to learn about you before we can start doling out information. But this group is a great resource for information to take back to your own doctor.

Don't give up..it will get better once you learn how to control and manage your illness..

Sandie in land USA

http://www.cysticfibrosismedicine.com/htmldocs/CFText/bronchiectasis.htm

Never Look Down on SomeoneUnless You're Willing to Help Them UpStart the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

Most of us are ‘oldies’, and were probably dx much too late in most cases. You have something on your side, that you have a dx, and don’t have to spend years of wrong dx, not knowing.

what a positive message Joy..as bad as this can be for us..what a positively enlightening way to describe it..

Thanks

Sandie

Never Look Down on SomeoneUnless You're Willing to Help Them UpWho's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

Marie,

Hold on. There is life after diagnosis. I was diagnosed (dx) 18 years old, by men in white coats putting options to me of sheep lung transplant of an infected section, then telling me no, not poss because the bronch was spread throughout all of both lungs. I had a heavy fluid injected into one lung (via windpipe), to x-ray where there were functional parts of the lung, they didn’t do the other because by then I was rather stressed.

I missed a lot of school, and didn’t manage a year without lots sick leave when working. Sometimes you can live a sort of normal life, but with care – I would encourage you don’t push yourself, allow yourself what you need. By getting that sorted you then maybe can ‘teach’ others how to treat you. I didn’t know this in time, so if, by being aware, you’re able to, you have a great advantage. It does open you to unusual lifestyles, seek them out, and ways to be supported in them.

Most of us are ‘oldies’, and were probably dx much too late in most cases. You have something on your side, that you have a dx, and don’t have to spend years of wrong dx, not knowing.

Keep logging into this site, keep asking

Joy

--

Sentient beings, all our very own mothers, are as limitless as space

[Guest guest]

What kind of medications do they have you on? I am also looking at having a lung transplant. I am going the week after next for an evaluation for one. I am 41 years old. You are too young to be going through all this!! Where do you live?? marie_pr60622 wrote: I'm 19, recently diagnosed with Bronchiectasis. I have to do millions of exams and tests, I was tested for Cystic Fibrosis too. I was told that my lungs look worst than a

person who has been smoking for years. I might surgery to remove a portion of my lung or an entire transplant. Thats the option if I continue to get worst and not respond well to medicine. I had to leave school and quit my job because simple things have become extremely hard to do. I had to get a biopsy for a mass in my nose. Its like I try to live normal and try to push myself. But ends up with me not being able to breathe and in the hospital. I don't know how to handle this anymore, no matter how many treatments or exams, I can't seem to get any better, any advice?

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

I am not talking any medication, I refuse to take anymore, I'm tired of it all, I have been to the hospital for my appointments in like months. I cant do it anymore. I live in Chicago. I have been in the hospital my chest hurts but nothing I cant deal with. Its so hard. Cook wrote: What kind of medications do they have you on? I am also looking at having a lung transplant. I am going the week after next for an evaluation for one. I am 41 years old. You are too young to be going through all

this!! Where do you live?? marie_pr60622 <marie_pr60622> wrote: I'm 19, recently diagnosed with Bronchiectasis. I have to do millions of exams and tests, I was tested for Cystic Fibrosis too. I was told that my lungs look worst than a person who has been smoking for years. I might surgery to remove a portion of my lung or an entire transplant. Thats the option if I continue to get worst and not respond well to medicine. I had to leave school and quit my job because simple things have become extremely hard to do. I had to get a biopsy for a mass in my nose. Its like I try to live normal and try to push myself. But ends up with me not being able to breathe and in the hospital. I don't know how to handle this anymore, no matter how many treatments

or exams, I can't seem to get any better, any advice? Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

I live just a few hours south of Chicago by Peoria, IL. We go to Chicago several times a year. I take an antibiotic every Monday, Wednesday and Friday for my bronchiectasis. Has your doctor suggested anything like that? Do you go to Northwestern for medical care? I am transfering from Mayo Clinic down to -Jewish in St. Louis. Keep your chin up!!!! Keep talking. Marieliz Galindez wrote: I am not talking any medication, I

refuse to take anymore, I'm tired of it all, I have been to the hospital for my appointments in like months. I cant do it anymore. I live in Chicago. I have been in the hospital my chest hurts but nothing I cant deal with. Its so hard. Cook <dianaleacook> wrote: What kind of medications do they have you on? I am also looking at having a lung transplant. I am going the week after next for an evaluation for one. I am 41 years old. You are too young to be going through all this!! Where do you live?? marie_pr60622 <marie_pr60622> wrote: I'm 19, recently diagnosed with Bronchiectasis. I have to do millions of

exams and tests, I was tested for Cystic Fibrosis too. I was told that my lungs look worst than a person who has been smoking for years. I might surgery to remove a portion of my lung or an entire transplant. Thats the option if I continue to get worst and not respond well to medicine. I had to leave school and quit my job because simple things have become extremely hard to do. I had to get a biopsy for a mass in my nose. Its like I try to live normal and try to push myself. But ends up with me not being able to breathe and in the hospital. I don't know how to handle this anymore, no matter how many treatments or exams, I can't seem to get any better, any advice? Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Never miss a thing. Make Yahoo your homepage.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

I went to University of Illinois, They suggested physical therapy, medicines for my low blood pressure, ummm lets see. Antibiotics for the infection in my right lung. Since my main bronchial is abnormally large and because of so much infection the wall around it is thin so med for that. My nasal med, my allergy. Seriously my house is like a pharmacy lol, My father suggested that I live in a bubble...LOL Cook wrote: I live just a few hours south of Chicago by Peoria, IL. We go to Chicago

several times a year. I take an antibiotic every Monday, Wednesday and Friday for my bronchiectasis. Has your doctor suggested anything like that? Do you go to Northwestern for medical care? I am transfering from Mayo Clinic down to -Jewish in St. Louis. Keep your chin up!!!! Keep talking. Marieliz Galindez <marie_pr60622> wrote: I am not talking any medication, I refuse to take anymore, I'm tired of it all, I have been to the hospital for my appointments in like months. I cant do it anymore. I live in Chicago. I have been in the hospital my chest hurts but nothing I cant deal with. Its so hard. Cook <dianaleacook> wrote: What kind of medications do they have you on? I am also looking at having a lung transplant. I am going the week after next for an evaluation for one. I am 41 years old. You are too young to be going through all this!! Where do you live?? marie_pr60622 <marie_pr60622> wrote: I'm 19, recently diagnosed with Bronchiectasis. I have to do millions of exams and tests, I was tested for Cystic Fibrosis too. I was told that my lungs look worst than a person who has been smoking for years. I might surgery to remove a portion of my lung or an entire transplant. Thats the option if I continue to get worst and not respond well to medicine. I had to leave school and quit my job because simple things have become

extremely hard to do. I had to get a biopsy for a mass in my nose. Its like I try to live normal and try to push myself. But ends up with me not being able to breathe and in the hospital. I don't know how to handle this anymore, no matter how many treatments or exams, I can't seem to get any better, any advice? Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Never miss a thing. Make Yahoo your homepage. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

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[Guest guest]

Hahaha. I have often thought life would be easier in a bubble like the boy in a bubble!!! If you don't want to take all those meds, just tell your doctors. I had mine cut down as far as possible about a year ago because I was tired of all the meds! Are you still connected to a doctor?? Marieliz Galindez wrote: I went to University of Illinois, They suggested physical therapy, medicines for my low blood pressure, ummm lets

see. Antibiotics for the infection in my right lung. Since my main bronchial is abnormally large and because of so much infection the wall around it is thin so med for that. My nasal med, my allergy. Seriously my house is like a pharmacy lol, My father suggested that I live in a bubble...LOL Cook <dianaleacook> wrote: I live just a few hours south of Chicago by Peoria, IL. We go to Chicago several times a year. I take an antibiotic every Monday, Wednesday and Friday for my bronchiectasis. Has your doctor suggested anything like that? Do you go to Northwestern for medical care? I am transfering from Mayo Clinic down to -Jewish in St. Louis. Keep your chin up!!!! Keep talking. Marieliz Galindez

<marie_pr60622> wrote: I am not talking any medication, I refuse to take anymore, I'm tired of it all, I have been to the hospital for my appointments in like months. I cant do it anymore. I live in Chicago. I have been in the hospital my chest hurts but nothing I cant deal with. Its so hard. Cook <dianaleacook> wrote: What kind of medications do they have you on? I am also looking at having a lung transplant. I am going the week after next for an evaluation for one. I am 41 years old. You are too young to be going through all this!! Where do you live?? marie_pr60622 <marie_pr60622>

wrote: I'm 19, recently diagnosed with Bronchiectasis. I have to do millions of exams and tests, I was tested for Cystic Fibrosis too. I was told that my lungs look worst than a person who has been smoking for years. I might surgery to remove a portion of my lung or an entire transplant. Thats the option if I continue to get worst and not respond well to medicine. I had to leave school and quit my job because simple things have become extremely hard to do. I had to get a biopsy for a mass in my nose. Its like I try to live normal and try to push myself. But ends up with me not being able to breathe and in the hospital. I don't know how to handle this anymore, no matter how many treatments or exams, I can't seem to get any better, any advice? Be a better

friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Never miss a thing. Make Yahoo your homepage. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

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[Guest guest]

Hi Joy! I have another disease too called Obliterative Bronchiolitis. That is why I take the antibiotic every Monday, Wednesday and Friday.

I have to say this..there are dif doctors who treat bronchiectasis in different ways..the bottom line is this..the only way to control the flareups is with meds. Whether you do rotating med one week on 2 weeks off or abx every other day for the rest of your life..there's no getting around it..

My dr does routine sputum cultures to check my resistance to meds and see which are workign and which arent..so far they're all working and no resistance has built up..yay yay for me!

He's conservative with steroids but I must say I feel like I'm on top of the world when I'm taking them and take advantage of those times by getting stuff done I couldn't do otherwise.

It is what it is folks..be careful about all those ' natural ' remedies out there..they're also many of us who have allergies to them and don't know it till we try them..trial and error does suck sometimes..remember just cause it's ' natural ' doesn't mean it's good for you.

Stay informed but be wise

Sandie land USA

Never Look Down on SomeoneUnless You're Willing to Help Them UpWho's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

I was told two years ago I would be on antibiotics and cortisone for the rest of my life, and never feel any better and eventually not be able to get out of bed. I was resigned to this and was really struggling. A friend who I hadn't seen for a while, said I looked like I was dying. I quit my job, moved to a house I share with my daughter and her three children, 11, 8 and 5. Huge change in life style. Lots of struggles with adjusting, AND new doctors. The one who told me the above had moved to Carbondale, in so. IL.

New pulmon doc did lots of tests, said I have immunoglobulin deficiency (I don't know which kind) and could NOT take anti's anymore. Although each day is a struggle, and some days I barely get out of bed, I am doing WAY more than I thought I could. Hospitalized last spring for possible pulmonary hypertension, a possible side effect of bronch. Didn't find it or anything else. Then last month had esophagram and manometry test because my esophagus is dilated. Found that there is no motility in esophagus, food gets down by gravity. Fortunately, no cancer or need for surgery. Now I am scheduled for a sleep study next week, even though I sleep well, there are two types of sleep apnea, obstructive and central. Sleep apnea central can be a side effect of bronch too. It is just one pile on top of another. Also, my legs and knees ache and I get very shaky. I try to eat and drink well, but have a hard time eating enough. I have lost about 5 pounds in the past couple of months. I take vitamins and calcium, an extra B12, Spireva for bronch, a GERD med and a calcium channel blocker for I am not sure. Also an adult aspirin every day. This I have been doing for some time at my doctors advise.

It is almost a full time job to just take care of me. I am also grandma, wife to my daughter, cook, shop and do laundry, etc. plus the stress of living with others after living alone for 20 years. Also three other grown children and 6 grandchildren all with their problems and issues. I love them but it is very difficult for them to understand what I am going through or what is next.

Thanks for the support everyone. And letting me rant.

MarilynWho's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

I was told two years ago I would be on antibiotics and cortisone for the rest of my life, and never feel any better and eventually not be able to get out of bed. I was resigned to this and was really struggling. A friend who I hadn't seen for a while, said I looked like I was dying. I quit my job, moved to a house I share with my daughter and her three children, 11, 8 and 5. Huge change in life style. Lots of struggles with adjusting, AND new doctors. The one who told me the above had moved to Carbondale, in so. IL.

New pulmon doc did lots of tests, said I have immunoglobulin deficiency (I don't know which kind) and could NOT take anti's anymore.

I was just tested for that..and by the grace of God I dont have that..maybe that's why anti's are still a good option for me? <shrug>

Sandie

Never Look Down on SomeoneUnless You're Willing to Help Them UpWho's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

I take vitamins and calcium, an extra B12, Spireva for bronch, a GERD med and a calcium channel blocker for I am not sure. Also an adult aspirin every day. This I have been doing for some time at my doctors advise.

well if that's not enough to worry about let me add another worry to that plate..spiriva and advair cause cataracts and glaucoma..i was told my eye dr dx'd glaucoma and wants to do further testing..damned if we do..damned if we dont

sandie

Never Look Down on SomeoneUnless You're Willing to Help Them UpWho's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

, Marie,

No, no-one should have to go through this....

, I don’t understand why abx 3xweekly, have not ever encountered that one (me, dx age 18, now 55 but coughed gunk since childhood). Also, pls check websites – what I have so far come across is that surgery itself is a cause of bronch – so how is it if you already have it? I don’t know myself of good results of surgery from people I know who have had... Anaesthetic itself is the hardest part of surgery for the lungs. Another thing to find out is, is your bronch very tightly localised. If not, the bronch will spread anyway, and be made worse because of the surgery.

I don’t want to be a ‘damper’ but surgery is tough, if you’re healthy. If you have bronch – don’t go there!

Marie, if you have infx, you do need abx. Not taking them means that the process of damage to the lungs continues. I know exactly what you are saying. I have been there – most of my life. I woke around 2am one night, coughing up heaps of bright blood. I had had a wracking cough for weeks, living on over-the-counter cough meds, until they just about made me throw up. I told myself it was just some throat lining torn from coughing – it was pneumonia +++. Then heavier than ever meds – Bactrim – 2 x 3/daily, and steroids which caused gut bleeding... Need I go on? I did all the alternative, natural therapies. I hated abx. And still do. Every inf is a toss-up, do I or don’t I? How long can I last? If I take abx, I risk fungal infx, if I don’t I risk more lung damage. I kind of sense something about the scar – I have mine, from a pedicle graft for cleft palate, but there’s an awful lot I don’t remember of childhood or adolescence. And neither do my family...Hmmm.

Oi - between a rock and a hard place! Oh well, I could still dance till at least my 40s, I still have two arms, two legs (even tho sometimes they don’t feel capable of doing much), and can wipe my own arse! There are plenty enough people with illnesses and disabilities who can’t do that at least....

I know, doesn’t it suck when someone tells you there are people worse off - when you can’t breathe!

You have something I did not have at 18 years old when diagnosed – you can get information. I had none, my family were hopeless – as were doctors.

Research, research research – don’t get cut just because someone in a white coat says you should. They get paid big dollars and you have to live the results. PLEASE take time to consider before you decide. Just so you know I’m not some freak – I had more than 25 operations before I was 21 years old, and then several more – 2 to 3 hours each. Major surgery is classified according to the time you’re under anaesthetic, not the nature of the surgery itself. It is the anaesthetic which usually is why people die, or have complications, it is extremely hard on the lungs.

I wish I could offer you a ‘way out’. I can’t, but only what I have learnt, much of the hard way, and too late sometimes (for me),

joy

[Guest guest]

That's strange about the scar. I'd say it's time to sit the parents down and have a heart to heart about that scar!!! How long is the scar??? Marieliz Galindez wrote: Yea I am still connected to my primary physician and my pulmonary doctor. But I tried they took away meds already, I just have to deal with all the ones I have u know. I used to have a box completely filled with medication....LOL pharmacy I know, 19yrs old and dealing

with all this, Been thru it my entire life u know. I have a scar in the center of my chest and I question my parents about it but they always change the subject. Kinda always been curious about how it got there? Cook <dianaleacook> wrote: Hahaha. I have often thought life would be easier in a bubble like the boy in a bubble!!! If you don't want to take all those meds, just tell your doctors. I had mine cut down as far as possible about a year ago because I was tired of all the meds! Are you still connected to a doctor?? Marieliz Galindez <marie_pr60622> wrote: I went to University of Illinois, They

suggested physical therapy, medicines for my low blood pressure, ummm lets see. Antibiotics for the infection in my right lung. Since my main bronchial is abnormally large and because of so much infection the wall around it is thin so med for that. My nasal med, my allergy. Seriously my house is like a pharmacy lol, My father suggested that I live in a bubble...LOL Cook <dianaleacook> wrote: I live just a few hours south of Chicago by Peoria, IL. We go to Chicago several times a year. I take an antibiotic every Monday, Wednesday and Friday for my bronchiectasis. Has your doctor suggested anything like that? Do you go to Northwestern for medical care? I am transfering from Mayo Clinic down to -Jewish in St. Louis. Keep your chin up!!!! Keep talking. Marieliz Galindez <marie_pr60622> wrote: I am not talking any medication, I refuse to take anymore, I'm tired of it all, I have been to the hospital for my appointments in like months. I cant do it anymore. I live in Chicago. I have been in the hospital my chest hurts but nothing I cant deal with. Its so hard. Cook <dianaleacook> wrote: What kind of medications do they have you on? I am also looking at having a lung transplant. I am going the week after next for an evaluation for one. I am 41 years old. You are too young to be going through all this!! Where do you live?? marie_pr60622 <marie_pr60622> wrote: I'm 19, recently diagnosed with Bronchiectasis. I have to do millions of exams and tests, I was tested for Cystic Fibrosis too. I was told that my lungs look worst than a person who has been smoking for years. I might surgery to remove a portion of my lung or an entire transplant. Thats the option if I continue to get worst and not respond well to medicine. I had to leave school and quit my job because simple things have become extremely hard to do. I had to get a biopsy for a mass in my nose. Its like I try to live normal and try to push myself. But ends up with me not being able to breathe and in the hospital. I don't know how to handle this anymore, no matter how many treatments or exams, I can't seem to get any better, any

advice? Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Never miss a thing. Make Yahoo your homepage. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Looking for last minute shopping deals? Find them fast with Yahoo! Search. Never miss a thing. Make Yahoo your homepage.

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Hi Joy! I have another disease too called Obliterative Bronchiolitis. That is why I take the antibiotic every Monday, Wednesday and Friday. Have a great day! joy hensby wrote: , Marie,No, no-one should have to go through this.... , I don’t understand why abx 3xweekly, have not ever encountered that one (me, dx age 18, now 55 but

coughed gunk since childhood). Also, pls check websites – what I have so far come across is that surgery itself is a cause of bronch – so how is it if you already have it? I don’t know myself of good results of surgery from people I know who have had... Anaesthetic itself is the hardest part of surgery for the lungs. Another thing to find out is, is your bronch very tightly localised. If not, the bronch will spread anyway, and be made worse because of the surgery.I don’t want to be a ‘damper’ but surgery is tough, if you’re healthy. If you have bronch – don’t go there!Marie, if you have infx, you do need abx. Not taking them means that the process of damage to the lungs continues. I know exactly what you are saying. I have been there – most of my life. I woke around 2am one night, coughing up heaps of bright blood. I had had a wracking cough for weeks, living on over-the-counter

cough meds, until they just about made me throw up. I told myself it was just some throat lining torn from coughing – it was pneumonia +++. Then heavier than ever meds – Bactrim – 2 x 3/daily, and steroids which caused gut bleeding... Need I go on? I did all the alternative, natural therapies. I hated abx. And still do. Every inf is a toss-up, do I or don’t I? How long can I last? If I take abx, I risk fungal infx, if I don’t I risk more lung damage. I kind of sense something about the scar – I have mine, from a pedicle graft for cleft palate, but there’s an awful lot I don’t remember of childhood or adolescence. And neither do my family...Hmmm.Oi - between a rock and a hard place! Oh well, I could still dance till at least my 40s, I still have two arms, two legs (even tho sometimes they don’t feel capable of doing much), and can

wipe my own arse! There are plenty enough people with illnesses and disabilities who can’t do that at least....I know, doesn’t it suck when someone tells you there are people worse off - when you can’t breathe!You have something I did not have at 18 years old when diagnosed – you can get information. I had none, my family were hopeless – as were doctors.Research, research research – don’t get cut just because someone in a white coat says you should. They get paid big dollars and you have to live the results. PLEASE take time to consider before you decide. Just so you know I’m not some freak – I had more than 25 operations before I was 21 years old, and then several more – 2 to 3 hours each. Major surgery is classified according to the time you’re under anaesthetic, not the nature of the surgery itself. It is the anaesthetic which usually is why people die, or have complications, it is extremely hard on the

lungs.I wish I could offer you a ‘way out’. I can’t, but only what I have learnt, much of the hard way, and too late sometimes (for me),joy

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Right! Also urinary tract problems.Who's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

,

Thank you! I do feel like this has all happened for God's reason and not as a punishment.

MarilynWho's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

Bravo to You Marilyn........YOU GO GIRL!!!!

Hope you get some ME time in you're busy schedule.....You're family is certainly blessed to have you for a mother.

Re: Need Help

I was told two years ago I would be on antibiotics and cortisone for the rest of my life, and never feel any better and eventually not be able to get out of bed. I was resigned to this and was really struggling. A friend who I hadn't seen for a while, said I looked like I was dying. I quit my job, moved to a house I share with my daughter and her three children, 11, 8 and 5. Huge change in life style. Lots of struggles with adjusting, AND new doctors. The one who told me the above had moved to Carbondale, in so. IL.

New pulmon doc did lots of tests, said I have immunoglobulin deficiency (I don't know which kind) and could NOT take anti's anymore. Although each day is a struggle, and some days I barely get out of bed, I am doing WAY more than I thought I could. Hospitalized last spring for possible pulmonary hypertension, a possible side effect of bronch. Didn't find it or anything else. Then last month had esophagram and manometry test because my esophagus is dilated. Found that there is no motility in esophagus, food gets down by gravity. Fortunately, no cancer or need for surgery. Now I am scheduled for a sleep study next week, even though I sleep well, there are two types of sleep apnea, obstructive and central. Sleep apnea central can be a side effect of bronch too. It is just one pile on top of another. Also, my legs and knees ache and I get very shaky. I try to eat and drink well, but have a hard time eating enough. I have lost about 5 pounds in the past couple of months. I take vitamins and calcium, an extra B12, Spireva for bronch, a GERD med and a calcium channel blocker for I am not sure. Also an adult aspirin every day. This I have been doing for some time at my doctors advise.

It is almost a full time job to just take care of me. I am also grandma, wife to my daughter, cook, shop and do laundry, etc. plus the stress of living with others after living alone for 20 years. Also three other grown children and 6 grandchildren all with their problems and issues. I love them but it is very difficult for them to understand what I am going through or what is next.

Thanks for the support everyone. And letting me rant.

Marilyn

Who's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

I also have mycobacterium. Am pointing

this out because my infectious disease dr sent me to eye dr to get a base

line. Exam was covered because of the bronc meds or the myco meds. Remember to

mention it if going for eye exam.

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Collis

Sent: Saturday, February 02, 2008

7:02 PM

To: bronchiectasis

Subject: Re: Need

Help

Thanks for the heads up on Advair...I

believe it is the puffer of choice by the Specialists & Dr.....apparently

it has 2 medications in it that bennefit our breathing! Appreciate that

information, as I've been just thinking about having my eyes checked, I was

also thinking about corrective lazer eye surgery for reading. I have a

lot of contract reading to do and it is all in fine print. I have

heard only good things about this surgery, but have never asked the group if

anyone with our disease has had it and if so what kind of results.

Thanks, Again

Re:

Need Help

In a message

dated 2/2/2008 1:56:56 P.M. Eastern Standard Time, Mmanow1aol writes:

I take vitamins and calcium, an extra

B12, Spireva for bronch, a GERD med and a calcium channel blocker for I am not

sure. Also an adult aspirin every day. This I have been doing for some

time at my doctors advise.

well if that's

not enough to worry about let me add another worry to that plate..spiriva and

advair cause cataracts and glaucoma..i was told my eye dr dx'd glaucoma and

wants to do further testing..damned if we do..damned if we dont

sandie

Never Look Down on Someone

Unless You're Willing to Help Them Up

Who's never won? Biggest

Grammy Award surprises of all time on AOL Music.

[Guest guest]

Thanks for the heads up on Advair...I believe it is the puffer of choice by the Specialists & Dr.....apparently it has 2 medications in it that bennefit our breathing! Appreciate that information, as I've been just thinking about having my eyes checked, I was also thinking about corrective lazer eye surgery for reading. I have a lot of contract reading to do and it is all in fine print. I have heard only good things about this surgery, but have never asked the group if anyone with our disease has had it and if so what kind of results.

Thanks, Again

Re: Need Help

I take vitamins and calcium, an extra B12, Spireva for bronch, a GERD med and a calcium channel blocker for I am not sure. Also an adult aspirin every day. This I have been doing for some time at my doctors advise.

well if that's not enough to worry about let me add another worry to that plate..spiriva and advair cause cataracts and glaucoma..i was told my eye dr dx'd glaucoma and wants to do further testing..damned if we do..damned if we dont

sandie

Never Look Down on SomeoneUnless You're Willing to Help Them Up

Who's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

The scar is about from the middle of my chest to kinda reaching the end of my breast, its right in the middle and its a line its not like anyone cannot notice it u knoe. Cook wrote: That's strange about the scar. I'd say it's time to sit the parents down and have a heart to heart about that scar!!! How long is the scar??? Marieliz Galindez <marie_pr60622> wrote: Yea I am still connected to my primary physician and my pulmonary doctor. But I tried they took away meds already, I just have to deal with all the ones I have u know. I used to have a box completely filled with medication....LOL pharmacy I know, 19yrs old and dealing with all this, Been thru it my entire life u know. I have a scar in the center of my chest and I question my parents about it but they always change the subject. Kinda always been curious about how it got there? Cook <dianaleacook> wrote: Hahaha. I have often thought life would be easier in a bubble like the boy in a bubble!!! If you don't want to take all those meds, just tell your doctors. I had mine cut down as far as possible about a year ago because I was tired of all

the meds! Are you still connected to a doctor?? Marieliz Galindez <marie_pr60622> wrote: I went to University of Illinois, They suggested physical therapy, medicines for my low blood pressure, ummm lets see. Antibiotics for the infection in my right lung. Since my main bronchial is abnormally large and because of so much infection the wall around it is thin so med for that. My nasal med, my allergy. Seriously my house is like a pharmacy lol, My father suggested that I live in a bubble...LOL Cook <dianaleacook> wrote: I live just a few hours south of Chicago by Peoria, IL. We go to Chicago several times a

year. I take an antibiotic every Monday, Wednesday and Friday for my bronchiectasis. Has your doctor suggested anything like that? Do you go to Northwestern for medical care? I am transfering from Mayo Clinic down to -Jewish in St. Louis. Keep your chin up!!!! Keep talking. Marieliz Galindez <marie_pr60622> wrote: I am not talking any medication, I refuse to take anymore, I'm tired of it all, I have been to the hospital for my appointments in like months. I cant do it anymore. I live in Chicago. I have been in the hospital my chest hurts but nothing I cant deal with. Its so hard. Cook <dianaleacook> wrote:

What kind of medications do they have you on? I am also looking at having a lung transplant. I am going the week after next for an evaluation for one. I am 41 years old. You are too young to be going through all this!! Where do you live?? marie_pr60622 <marie_pr60622> wrote: I'm 19, recently diagnosed with Bronchiectasis. I have to do millions of exams and tests, I was tested for Cystic Fibrosis too. I was told that my lungs look worst than a person who has been smoking for years. I might surgery to remove a portion of my lung or an entire transplant. Thats the option if I continue to get worst and not respond well to medicine. I had to leave school and quit my job because simple things have become extremely hard to do. I had

to get a biopsy for a mass in my nose. Its like I try to live normal and try to push myself. But ends up with me not being able to breathe and in the hospital. I don't know how to handle this anymore, no matter how many treatments or exams, I can't seem to get any better, any advice? Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Never miss a thing. Make Yahoo your homepage. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Looking for last minute shopping deals? Find them fast with Yahoo! Search. Never miss a thing. Make Yahoo your homepage. Looking for last minute shopping deals? Find them fast with Yahoo! Search.

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[Guest guest]

Hi Marilyn,

I feel like if we met we’d be like old friends! I always enjoy to get an email come through from you. I admire your sense of humour that comes through,

I have a sense that your initial dx and treatment was not the best, if not only for the sense of hopelessness it would have left you with. If you don’t think the sleep test is important now, can you ask for it to be scheduled later – sounds like you need a break! I know I get to a point sometimes between dr for joint pains, rashes, bronc (all different) and dentist I feel like I don’t have much life in between, same with meds. I was on antidepressants for nearly a year, and after having a whole lot of other meds just felt ‘enough!’ and stopped them (slowly). I still haven’t started taking strontium for osteoporosis, the thought of something else to make an already over-loaded digestive system have to deal with another one, every day... Hmmm!

I know of people here in our local group, as well as hearing others in this chat group say they’ve been on wall-to-wall abx and steroids, to the point nothing works – really does seem to suggest that long-term/permanet abx do need to be questioned. I think I recall you said you have mycobacterium infx – I haven’t done much research on this one, but it does sound like ‘very difficult to treat’ would be a gross understatement.

I didn’t know when I was on prednisolone about age 30, that it almost definitely results in osteoporosis, which means NO calcium supplements if you’re on meds for osteo, and then some of the osteo meds can cause jaw-bone necrosis if you get to needing dental surgery. None of us w bronc need all this on top of it...

I noticed you take calcium, and a ‘calcium channel blocker’ ?

I really appreciate having a computer and being online in a way I hadn’t til getting acquainted this way with such extraordinary ordinary people.

Joy

-- --

" Wealth is nothing, position is nothing, fame is nothing.

Who you become inside is everything.

What happens to you is not as important as how you react to what happens. "

[Guest guest]

I forgot to add glaucoma among my little list of ailments other than bronc. Which is why I found the article “How to Treat Bronchiectasis” so refreshing in its approach to bronc being a syndrome rather than a singular disease...

Joy

-- --

" Wealth is nothing, position is nothing, fame is nothing.

Who you become inside is everything.

What happens to you is not as important as how you react to what happens. "

[Guest guest]

Bravo to You Marilyn........YOU GO GIRL!!!!

 

Hope you get some ME time in you're busy schedule.....You're family is certainly blessed to have you for a mother.

 

My sentiments likewise

Joy

-- --

" Wealth is nothing, position is nothing, fame is nothing.

Who you become inside is everything.

What happens to you is not as important as how you react to what happens. "

[Guest guest]

Hi Marie,

How did you go with all the tests? Having been there often enough, I know how draining, stressful and downright bloody boring the waiting around, being pocked and prodded can be. It sure is not fun! I learnt early on to take a good book, the reading material in waiting rooms (if there is any) is usually pretty awful. Or sudoku, whatever helps the waiting.

Be aware that lung transplant itself can lead to bronchiectasis – so if you already have it, it could be made worse? I had the idea suggested to me when I was 18, but further tests revealed it was already too widespread, it is only useful if the bronchiectasis is localised in an isolated pocket of the lung. What can you do in the immediate future to make life easier? Do you have social workers who can maybe help you? Do you have doctors you can ask and get information you understand? Any support groups in your area? Sometimes families and friends find it hard to understand - why don’t you get better?

Keep logging onto the chat group, keep asking questions. Your needs and your questions will be different to other peoples’, because bronc is so variable, because we have different pathogens (bugs) which make us unwell (an exacerbation), other health issues and age differences. But even though right now it may feel overwhelming and you want it all to ‘go away!’ it is empowering to know what you have – like it or not, it is going to be your ‘friend’ for the rest of your life, and it has many things to teach us, some painful, some wonderful. Many doctors are unfamiliar with bronc, so it is a good idea have your records forwarded to your new doctor if you move, or find out about accessing and having your own files.

You’ll become more familiar with the words we use, and the abbreviations (I have picked up on a lot in a short time). As a heads up here’s a few to help get started :

ab = antibiotic, abx = plural antibiotics; inf/infx =infection(s);

dx = diagnosed/diagnosis; undx = undiagnosed; meds = medications; scrips - prescriptions

CF = Cystic Fibrosis; IV = intravenous; w = with

There are three main pathogens (organisms which cause disease) :

– bacteria, eg bronchitis (abx used)

- viral - eg a cold or flu, abx do not work, there are no meds to ‘cure’, just things that may alleviate (= help, ease); and

- fungal eg thrush, antifungal meds may be required, but one of the bugs of bronchiectasis is a different fungal inf, Aspergillus, and is very hard to treat and of course won’t respond to abx.

You will feel better once you get a handle on this, and treatment that helps – but you do need correct information. Do you know which pathogen causes bronchiectasis?

Hang in there, and keep in touch,

Joy

-- --

" Wealth is nothing, position is nothing, fame is nothing.

Who you become inside is everything.

What happens to you is not as important as how you react to what happens. "