Re: New to bronchiectasis

[Guest guest]

Karin,

Your response was excellent, and I even learned more from your response. You were fortunate in that your bronchiectasis was diagnosed early. It sounds like you have a good doctor, a lot of knowledge about the disease and know how to communicate with your doctor. Unfortunately, in my situation my health insurance required that my primary care doctor refer me to a pulmonary doctor. I requested that he do that a number of times, and he said that my symptoms were all due to allergies which I do have. However, I felt that they were not so bad to cause me to be coughing constantly. Thanks for your good advice. I only wish I would have had this information about eight years ago.

Norma

[Guest guest]

Karin,

Your response was excellent, and I even learned more from your response. You were fortunate in that your bronchiectasis was diagnosed early. It sounds like you have a good doctor, a lot of knowledge about the disease and know how to communicate with your doctor. Unfortunately, in my situation my health insurance required that my primary care doctor refer me to a pulmonary doctor. I requested that he do that a number of times, and he said that my symptoms were all due to allergies which I do have. However, I felt that they were not so bad to cause me to be coughing constantly. Thanks for your good advice. I only wish I would have had this information about eight years ago.

Norma

[Guest guest]

Hi, Mike! Welcome to the board!!

The first thing you must understand is that there are no two bronch

cases alike. You will learn this as others on this board share

their histories. Right now, I'll share mine, and the hints I have

after living with it for nearly thirty years.

I was diagnosed a week after my sixth birthday, and am now 32. It

turns out that the reason I have it stems from an immune deficiency,

but that's a whole other story. My mother never made me feel like

there was anything wrong with me- postural drainage, medications,

coughing, etc. was all treated so matter-of-factly. This outlook (I

hesitate to use the word attitude because it's a negative

conotation.) has helped me tremendously. I went through school

normally, albeit with more absences than normal kids. I graduated

and also went on to get two college degrees, the second one while

working two jobs. I have been married for three years, and I work

full time in a high school, as a sign language interpreter. I do

get sick mroe often than my coworkers do, but they all know my whole

story, and are very gracious and understanding about it, which I am

extremely blessed to have.

My hints go as follows:

1. Monitoring is good. The more info you have as to exactly how

widespread or severe yours is, the better.

2. Exercise is good. The more exercise you can do, the better. It

will keep your lungs in better shape, along with the rest of your

anatomy. It sounds like yours is even milder than mine, which is

good- you should be able to hold off any deterioration for a long

time.

3. Drinking lots and lots of water is good. You said that you have

no symptoms as yet. Do you have a cough that produces mucus- like a

smoker's cough? If so, that's from the bronchiectasis. Any time

you feel the need to cough something up, do not swallow it. Cough

it up, and spit it into a tissue or something, because the mucus

will otherwise get swallowed into your stomach, making your gut

upset, or it will go back down into your lungs, where it will sit

and breed infection. Why wtaer? the water thins out the mucus, and

makes it easier to cough up. Which brings me to my next point...

4. Infection is bad. If you are not careful, any infection can lead

to your lungs deteriorating more, and lung tissue does not grow

back. Learn to listen to your body. If you are tired, no matter

what important work things you have, go home and go to sleep. If

you feel even a little sick, or just " off " , get thee to a doctor.

You live in that body, and you know it better than your doctor

does. I can't tell you how many times I have walked into my

doctor's office and informed him that I had bronchitis or pneumonia,

and he said I was right. I just know how I am supposed to feel, and

how things feel when I am sick, and I have been fortunate for the

most part to be blessed with doctors who work with me.

5. Find a good pulmonologist and stay with him/her to monitor your

lungs. Even if you only check in once or twice a year, you must

have a pulmonologist to keep an eye on things. Bronchiectasis,

while being diagnosed at greater rates and in a more varied

population than ever before (The next time I hear, " But you're

awfully young to have bronchiectasis " I may throw the speaker out

the window), is still fairly rare, and most GP's have never even

heard of it! Clearly, if they don't know what it is, you're not

going to get optimum care for it.

Feel free to email me privately if you want with any questions.

Like I said, I'm a veteran.

Karin

>Hi all! I was recently diagnosed with bronchiectasis and have

surely read about this disease quite a bit. My CT said mt CT was

suggestive of bronchiectasis in the left upper lobe. Nothing

elsewhere. My Pulmonologists went with the CT and diagnosed it

bronchiectasis. He said he was mild on should live a normal life. He

prescribed Adviar. I have no symptoms whatsoever, and this was

discovered on a CT scan that was looking for kindey stones, which

led a a CT of my lungs. He want to do repeat PFT's and CT's every 6

months for at least the next 1 1/2 yrs to monitor it. Should I seek

a second opinion or wait the 6 months? I feel fine and have started

running 2-3 miles everyday since the Diag. My O2 at rest is 98 but

does drop to 94-95 while running (normal)? I did smoke for 23 yrs

(currently 41 yrs old) but gave it up when they found " something " in

my lungs. The didnt see any masses or nodules on my CT either. Any

suggestions?

[Guest guest]

Mike,

Welcome to the group. I’m surprised that anyone caught

your bronchiectasis without you having symptoms. It doesn’t seem to be anything that

is looked for unless they can’t find any other cause for repeated lung

infections. I was diagnosed about

six years ago after becoming quite ill for several months.

Karin’s advice was excellent. Keep up the exercising and drink lots of

water. The CT seems to be the

choice way to monitor the lung damage, so unless you’re not confident in your

current pulmonologist’s skills or you wind up with repeated infections, a

second opinion will probably be the same.

You will know when it’s time to get another opinion.

You’ve probably noticed that several

different parts of the globe are represented in this group. Sometimes we hear about new treatments

being tried elsewhere that could benefit others in the group. It’s a good way to stay informed. Keep us posted on your treatments,

successes, and challenges.

Barb

New to

bronchiectasis

Hi all! I was recently diagnosed with bronchiectasis

and have surely

read about this disease quite a bit. My CT said mt

CT was suggestive

of bronchiectasis in the left upper lobe. Nothing

elsewhere. My

Pulmonologists went with the CT and diagnosed it

bronchiectasis. He

said he was mild on should live a normal life. He

prescribed Adviar.

I have no symptoms whatsoever, and this was

discovered on a CT scan

that was looking for kindey stones, which led a a

CT of my lungs. He

want to do repeat PFT's and CT's every 6 months

for at least the

next 1 1/2 yrs to monitor it. Should I seek a

second opinion or wait

the 6 months? I feel fine and have started running

2-3 miles

everyday since the Diag. My O2 at rest is 98 but

does drop to 94-95

while running (normal)? I did smoke for 23 yrs

(currently 41 yrs

old) but gave it up when they found

" something " in my lungs. The

didnt see any masses or nodules on my CT either.

Any suggestions?

[Guest guest]

Mike,

Welcome to the group. I’m surprised that anyone caught

your bronchiectasis without you having symptoms. It doesn’t seem to be anything that

is looked for unless they can’t find any other cause for repeated lung

infections. I was diagnosed about

six years ago after becoming quite ill for several months.

Karin’s advice was excellent. Keep up the exercising and drink lots of

water. The CT seems to be the

choice way to monitor the lung damage, so unless you’re not confident in your

current pulmonologist’s skills or you wind up with repeated infections, a

second opinion will probably be the same.

You will know when it’s time to get another opinion.

You’ve probably noticed that several

different parts of the globe are represented in this group. Sometimes we hear about new treatments

being tried elsewhere that could benefit others in the group. It’s a good way to stay informed. Keep us posted on your treatments,

successes, and challenges.

Barb

New to

bronchiectasis

Hi all! I was recently diagnosed with bronchiectasis

and have surely

read about this disease quite a bit. My CT said mt

CT was suggestive

of bronchiectasis in the left upper lobe. Nothing

elsewhere. My

Pulmonologists went with the CT and diagnosed it

bronchiectasis. He

said he was mild on should live a normal life. He

prescribed Adviar.

I have no symptoms whatsoever, and this was

discovered on a CT scan

that was looking for kindey stones, which led a a

CT of my lungs. He

want to do repeat PFT's and CT's every 6 months

for at least the

next 1 1/2 yrs to monitor it. Should I seek a

second opinion or wait

the 6 months? I feel fine and have started running

2-3 miles

everyday since the Diag. My O2 at rest is 98 but

does drop to 94-95

while running (normal)? I did smoke for 23 yrs

(currently 41 yrs

old) but gave it up when they found

" something " in my lungs. The

didnt see any masses or nodules on my CT either.

Any suggestions?

[Guest guest]

I really appreciate everyone's input and hope to remain a active member. This is truely a great thing to be part of. Hope everyone is well!Barbara Erdmann wrote:

Mike,

Welcome to the group. I’m surprised that anyone caught your bronchiectasis without you having symptoms. It doesn’t seem to be anything that is looked for unless they can’t find any other cause for repeated lung infections. I was diagnosed about six years ago after becoming quite ill for several months.

Karin’s advice was excellent. Keep up the exercising and drink lots of water. The CT seems to be the choice way to monitor the lung damage, so unless you’re not confident in your current pulmonologist’s skills or you wind up with repeated infections, a second opinion will probably be the same. You will know when it’s time to get another opinion.

You’ve probably noticed that several different parts of the globe are represented in this group. Sometimes we hear about new treatments being tried elsewhere that could benefit others in the group. It’s a good way to stay informed. Keep us posted on your treatments, successes, and challenges.

Barb

-----Original Message-----From: mikeholder2004 Sent: Wednesday, August 18, 2004 7:23 PMTo: bronchiectasis Subject: New to bronchiectasis

Hi all! I was recently diagnosed with bronchiectasis and have surely read about this disease quite a bit. My CT said mt CT was suggestive of bronchiectasis in the left upper lobe. Nothing elsewhere. My Pulmonologists went with the CT and diagnosed it bronchiectasis. He said he was mild on should live a normal life. He prescribed Adviar. I have no symptoms whatsoever, and this was discovered on a CT scan that was looking for kindey stones, which led a a CT of my lungs. He want to do repeat PFT's and CT's every 6 months for at least the next 1 1/2 yrs to monitor it. Should I seek a second opinion or wait the 6 months? I feel fine and have started running 2-3 miles everyday since the Diag. My O2 at rest is 98 but does drop to 94-95 while running (normal)? I did smoke for 23 yrs (currently 41 yrs old) but gave it up when they found "something" in my lungs. The didnt see any masses or nodules on my CT either. Any suggestions?__________________________________________________

[Guest guest]

Hello Mike, No I personally would not bother with a second opinion . The Ct.

scan is the best way of determining whether you have bronchiectasis or

something else. Just continue to enjoy life and do whatever your doctor advises.

If

it makes you feel any better, I have had this disease for about sixty years

and it has just been the last four years that I have been having some shortness

of breath and a few bad infections. Up until then I was playing tennis, golf

and led an active life with the help of antibiotics four times a year. You

sound as if you are in pretty good shape. in Ca.

[Guest guest]

Hi Mike,

It sounds like you were fortunate in that your bronchiectasis was diagnosed early. The advice of those who have had this disease for a longer time than I have had it have given you excellent advice. Welcome to the group. I will not forget your name since one of my sons name is also Mike.

Norma from TX

[Guest guest]

Glad to hear from you Norma. I am in pretty good health but about 20

lbs overweight. Advair isnt making it any easier either. I've read

that Adviar can make some gain weight..... I'll just keep plugging

away at it.

Take care!

Mike

> Hi Mike,

>

> It sounds like you were fortunate in that your bronchiectasis was

diagnosed

> early. The advice of those who have had this disease for a

longer time than

> I have had it have given you excellent advice. Welcome to the

group. I will

> not forget your name since one of my sons name is also Mike.

> Norma from TX

[Guest guest]

Norma... Sorry that you cant take Advair. It doesnt make me nervous

but I can see how it would. I haven't been tired since I have been

on it. Not a terribly bad thing but I have a hard time going to bed

at night. I have to make myself go to bed and get a decent amount of

sleep as I'm sure I could make myself sick by not getting enough

rest. So as you can see, if could be harmful to not be tired as you

probably wouldnt be aware that you are wearing yourself thin until

its to late. I have been running 3 miles a day so that also wears on

the body, but is got to be so good for me.

> Mike,

>

> Maybe I need some Advair as I need to gain weight. I only weigh

100 lbs. I

> tried Advair, but it made me too nervous. I am glad that it

helps you but

> sorry about the weight gain problem.

>

> Norma