(no subject)

[Guest guest]

Hi ....thank you for writing I was beginning to think that I had done this wrong....lol

I am from Tennessee and I have just been diagnosed with this so it is all new to me...I got bronchitis which turned into pnemonia and after that went treated for a month with antibiotics and I kept getting worse instead of better I ended up in the hospital where I stayed for a week and had all kinds of tests run....my mri showed that my lungs were in horrible shape and then we did the bronchotomy.....(i know i misspelled that) but anyway I'm sure you know what I'm referring too.....I had just started a new job that I had only been on for a few months and now I can't work and am pretty limited to the house while the weather is so hot and humid....I just can't breathe at all if I go outside for too long.......I have good days and bad days...of course I do realize that I just got out of the hospital and it will take awhile to heal from this.....but it is frustrating to be so limited.....it is so nice to know that there are other people out there that I can talk to about this.......it has really lifted my spirits.

thanks Sondra

[Guest guest]

Hi Sondra! Nice to meet you. I'm 38. Where you from? I just sent in another reply which told a little about me so I wont repeat it. Just wanted to welcome you.

BLUEEYES1982345@... wrote: Hello my name is Sondra and I'm very new at this......don't even know if I"m doing it right at this moment.....sending this to this address.....but guess I'll find out soon enough....I've been recently diagnosed with bronchiectasis and am looking for other people to chat with about this diesese....it really has me baffled and has changed my whole life....I am a 36 year old woman and would love to chat with others about this diesese.....thank you. Sondra

[Guest guest]

Yes it does make me appreciate life to a whole new level...I at one point was really scared my lungs were just going to fail me completley.....now I'm thankful everyday I wake up and can take breaths.....My husband did buy a more thourough filter for our air conditioning system and it seems to filter the air alot more than the other ones.........I went and bought a humidifier to sleep with at night.....that seems to help with moistening the air some....and helps me to breathe better.....I was so addicted to sleeping with the fan on me that I didn't know what I was going to do without the noise.....but my humidifier sounds like a fan so believe it or not I was able to kill two birds with one stone......lol

I am interested in knowing if anyone else has trouble with achey feelings......sometimes my whole body aches......and its just awful.....didn't know if I was the only one who was expierencing this.......just curious........I do realize it will take time for me to get better....I just wish I was better at being patient......lol........thanks Sondra

[Guest guest]

Sondra,

You are definitely not alone. Try to keep your spirits up. It's a very long process to feeling better. I really thought I was dying when I was at my worst. I also never thought my life would ever get back to any sort of normalcy. It has. It takes time though. Once I was finally correctly diagnosed and put on the correct meds, it has taken me months to finally feel better. Some things will never be the same. You learn to appreciate everything and not take anything for granted, that's for sure. Get some air cleaners with ionizers for your house. There isn't much you can do for the humidity I guess. In that regard, I'm glad I'm in ARizona. I don't handle humidity well at all. WE are in our monsoon(rainy) season right now and even 20% humidity makes my airways seize up. I am a teacher and have been with my district for quite a few years so they were pretty understanding last year when I was so sick. It was hard on my students to have subs so much though. Try to stay positive and remember....things will get better!!!

BLUEEYES1982345@... wrote: Hi ....thank you for writing I was beginning to think that I had done this wrong....lolI am from Tennessee and I have just been diagnosed with this so it is all new to me...I got bronchitis which turned into pnemonia and after that went treated for a month with antibiotics and I kept getting worse instead of better I ended up in the hospital where I stayed for a week and had all kinds of tests run....my mri showed that my lungs were in horrible shape and then we did the bronchotomy.....(i know i misspelled that) but anyway I'm sure you know what I'm referring too.....I had just started a new job that I had only been on for a few months and now I can't work and am pretty limited to the house while the weather is so hot and humid....I just can't breathe at all if I go outside for too long.......I have good days and bad days...of course I do realize that I just got out of the hospital and it will take awhile to heal from this.....but it is frustrating to be so limited.....it is so nice to know that there are other people out there that I can talk to about this.......it has really lifted my spirits. thanks Sondra

[Guest guest]

Well at least I know its normal for me to be feeling achey......lol

I am like you and very grateful my chest dosen't hurt as much as it did at first......now if I can just conquer the rest......lol

Sondra

[Guest guest]

Oh, I still get those achey feelings most of the time, but at least my chest doesn't hurt like it did and at least I can breathe better.

BLUEEYES1982345@... wrote: Yes it does make me appreciate life to a whole new level...I at one point was really scared my lungs were just going to fail me completley.....now I'm thankful everyday I wake up and can take breaths.....My husband did buy a more thourough filter for our air conditioning system and it seems to filter the air alot more than the other ones.........I went and bought a humidifier to sleep with at night.....that seems to help with moistening the air some....and helps me to breathe better.....I was so addicted to sleeping with the fan on me that I didn't know what I was going to do without the noise.....but my humidifier sounds like a fan so believe it or not I was able to kill two birds with one stone......lolI am interested in knowing if anyone else has trouble with achey feelings......sometimes my whole body aches......and its just awful.....didn't know if I was the only one who was expierencing this.......just curious........I do realize it will take time for me to get better....I just wish I was better at being patient......lol........thanks Sondra

[Guest guest]

Hey Marc.....I also seem to ache in the left side more but strangely enough I even ache in my legs at times......I'm 36 and feel like I'm 80.......lol

I do hope you have found a dr that knows what he's doing......then maybe you can tell me....lol

I'm set up to meet with a new pulmonary dr so I'll have to see what she says and then just take it from there.....this site has been a real help to me though.....I am really enjoying getting the feed back on this from other people that are going through this also.....it really does help.

Sondra

[Guest guest]

Hi all,

Just finished reading the messages that have piled up.

Yes, I also get aches, mostly in my back and shoulder.

In June my left shoulder hurt quite a bit and when I

went to see the doctor regarding my coughing, they

ran a EKG just to make sure I wasn't having heart

attacks. I thought that was amusing being age 38,

never smoked, and having finished my first marathon in

May.

Sondra, it does get better. There will be times, most

likely long stretches, when you'll feel pretty normal.

Then you may have coughing spells. Even though I have

had this for a while, it seems that in the last few

years I have had more relapses and,therefore, I'm

trying to learn as much as I can.

My doctor who put me on Advair last month, today put

me on another round of antibiotics (Cipro) and

Prednezone. First time I've taken Prednezone. One

thing I have noticed it that my coughs have been much

drier. My doctor said that was due to the Advair,

causing less mucus build-up in my chest. All these

years of having different doctors, and I finally came

across one who knows what he's doing (I think).

I'm seeing my pulmonologist in August to see what he

says about my more frequent relapses. I think part of

it is not getting enough rest and too much stress.

Marc in New York

--- BLUEEYES1982345@... wrote:

& gt;

& gt; Yes it does make me appreciate life to a whole

new

& gt; level...I at one point was

& gt; really scared my lungs were just going to fail me

& gt; completely.....now I'm

& gt; thankful everyday I wake up and can take

& gt; breaths.....My husband did buy a

& gt; more thourough filter for our air conditioning

& gt; system and it seems to filter

& gt; the air alot more than the other ones.........I

went

& gt; and bought a humidifier

& gt; to sleep with at night.....that seems to help

with

& gt; moistening the air

& gt; some....and helps me to breathe better.....I was

so

& gt; addicted to sleeping with

& gt; the fan on me that I didn't know what I was going

to

& gt; do without the

& gt; noise.....but my humidifier sounds like a fan so

& gt; believe it or not I was able

& gt; to kill two birds with one stone......lol

& gt; I am interested in knowing if anyone else has

& gt; trouble with achey

& gt; feelings......sometimes my whole body

aches......and

& gt; its just

& gt; awful.....didn't know if I was the only one who

was

& gt; expierencing

& gt; this.......just curious........I do realize it

will

& gt; take time for me to get

& gt; better....I just wish I was better at being

& gt; patient......lol........thanks

& gt; Sondra

& gt;

__________________________________________________

[Guest guest]

It's a very long process to feeling better. I really thought I was dying when I was at my worst. I also never thought my life would ever get back to any sort of normalcy. It has. It takes time though. Once I was finally correctly diagnosed and put on the correct meds, it has taken me months to finally feel better.

When 's diagnosis was made in february this year I felt like he was at deeaths door. It has taken a good 4 months to get him anyway back near normal. He had a two week course of IV antibiotics that seemed to be like a majic wand and has given him back some quality of life. It is hard to know how much to let him carry on when he is getting blue and breathless. It is a balancing act between giving him a life and wrapping him in cotton wool. We went swimmin in the local outdoor pool today and he had a really good afternooon. He did have some really big coughs though that brought up some of the fdreaded yellow pus! Do I panic or wait and see?

I am truly hoping he will be really well for our summer holiday this yera. He has really missed out so much the last three summers.

Much love to all

Tina Hillier Mum to , 12 years old and possesor of an Extra Special Chromosome.

Rosie 10 ( who enjoys a life enhanced by the Joys and Trials of CdLS)

5, A budding Artist and Singer, Famously ignoring the fact that his eyesight is deteriorating.

And who is 3 years old and Very Very Loud!

http://uk.briefcase.yahoo.com/tdlhillier

[Guest guest]

>

Strange!! I have had that metal taste for the last few weeks... it has

subsided now but it was there for about a month and I thought maybe it was

something to do with a filling leaking or something!

Does anyone know anything about whether or not it relates to bronc?

--------------------------------------------------------------------

Get your own FREE local e-mail address at http://www.merseymail.com/

[Guest guest]

Sondra,

I am glad your Bronchoscopy went well. had a bronchial

lavage with his second surgery last week in the hope of getting

something culturable from his lungs. He is now on day 12 of his 14

day IV's and hte central line is working well.

I will be glad to get to the end of the course though it is very time

consuming and a big drag to be doing that morning and night. It takes

me 3/4 of an hour in the morning and almost 11/2 hours in the

evening. I am glad the Gent is only once a day! I managed to get up

and get it over with before anyone else got up this morning which did

make life easier but who wants to be up and functioning at 5.30 am on

a Saturday!!!

Hope your results are as good news as it can get!

Much love

Tina

[Guest guest]

Thank you tina........I'm so glad to hear that jonathans central line is working well.......hopefully he will be feeling better soon........I agree with you....no one I know would want to be up and functioning at 5:30 in the morning........lol sondra

[Guest guest]

Upcoming Workshop:

Journey to the Rich Port of Poetry, September 22-24, 2006, in beautiful San Puerto Rico, with Barbara Bethea and Schwietert.

A weekend intensive for those interested in Multicultural Poetry Practice!

Please look at the attachment for more details!

Have a wonderful day!

Barbara Bethea, MA, Registered Poetry Therapist

[Guest guest]

Hello everyone. I have had this officially for about 1 month now. I have had my ups and downs with emotions. I am 47 1/2, and scared to pieces. I had a biopsy and still waiting for results for over 2 weeks now with no word from my doctor, who I am not very pleased with. I have heard many reasons for this, and its been no help to me. I think once I get the results back, I will at least know something more (I hope to!) I am beginning the journey into the 'change of life", have a fairly stressful job at times, at least that is the way I feel. I am going through a stressful time with a sister who is not well, the big "A", and that is about the time this all began, as far as I can recall.

I am hoping for some answers as well as meeting and chatting with those who are going thru this. As I read up on EN, I have has these symptoms: tiredness, flu like feelings, blurry vision, sore lumps, and the feeling of being all alone with this.

I hope I have not bored any, or seemed to complain too much. I just want answers and to hear how others cope.

Thanks so much for your time, and for letting me join.

DebbieSee what's free at AOL.com.