Searchingforanswers

[anonymous]

Alyssa- ty for the links, planning a purchase this week <img src="i/expressions/face-icon-small-smile.gif" border="0">.

Anon- Yes water litterally makes me sick.

I don't know why it just does. Not only does it make me sick but shortly after swallowing water I end up with a non stop mouth fulll of saliva...not a fun experience.

And yes its entirely possible that I do have CF but am pancreous sufficient with this oddity due to another reason or that I don't have CF at all. The breathing/mucus issues also exist. At worst I'm partially pancreous sufficient. As stated way back in the begining of this thread I can eat almost anything I want I just have to keep it to small frequent meals. I eat to much at one tiime my digestive system gets mad at me, I don't spend all day nibbling then the shakyness starts. Since I have frequent post-nasal drip mucus gets in my throat and digestive system a lot of the time and causes addtional problems.

To clarify I don't eat a high fat diet ( at least not by any standard other then my crazy mothers <img src="i/expressions/face-icon-small-wink.gif" border="0">more high protein and high salt. What I stay away from are the "low-fat"/non-fat/diet foods. Especially the artifical crap. Whether I digest fat properly or not I really, really don't know. Even on the diet I have put together there are still some digestive issues. I just know that my mother's version of a healthy diet made me very sick and what I've figured out seems to at least be on the right track hopefully a diagnosis (whatever it is) and a nutritionist can complete the process.

S.F.A.

 

[anonymous]

Alyssa- ty for the links, planning a purchase this week <img src="i/expressions/face-icon-small-smile.gif" border="0">.

Anon- Yes water litterally makes me sick.

I don't know why it just does. Not only does it make me sick but shortly after swallowing water I end up with a non stop mouth fulll of saliva...not a fun experience.

And yes its entirely possible that I do have CF but am pancreous sufficient with this oddity due to another reason or that I don't have CF at all. The breathing/mucus issues also exist. At worst I'm partially pancreous sufficient. As stated way back in the begining of this thread I can eat almost anything I want I just have to keep it to small frequent meals. I eat to much at one tiime my digestive system gets mad at me, I don't spend all day nibbling then the shakyness starts. Since I have frequent post-nasal drip mucus gets in my throat and digestive system a lot of the time and causes addtional problems.

To clarify I don't eat a high fat diet ( at least not by any standard other then my crazy mothers <img src="i/expressions/face-icon-small-wink.gif" border="0">more high protein and high salt. What I stay away from are the "low-fat"/non-fat/diet foods. Especially the artifical crap. Whether I digest fat properly or not I really, really don't know. Even on the diet I have put together there are still some digestive issues. I just know that my mother's version of a healthy diet made me very sick and what I've figured out seems to at least be on the right track hopefully a diagnosis (whatever it is) and a nutritionist can complete the process.

S.F.A.

 

[jjflash]

Any more progress on the getting medical treatment, testing, etc front?

 

[jjflash]

Any more progress on the getting medical treatment, testing, etc front?

 

[jjflash]

Any more progress on the getting medical treatment, testing, etc front?

 

[searchingforanswers]

I FINALLY have an update to report and my login finally worked, I
think <img src="i/expressions/face-icon-small-smile.gif" border="0">  Although what is with the new Java thing?<br>
<br>
I went back to the doctor yesterday and she put me on a nebulizer
(sp?)for 15 minutes then another 15...wow did that make a
difference.  I'm not completely cleared up but I'm breathing
better then I have in a LONG time.  She is sending me for a
chest x-ray probably this evening (the first I've ever had ).
 I guess I've gotten so used to making it without fully
functional lungs, well you just don't feel the difference until you
get a portion of that back.  I actually got through an
entire musical phrase without breathing in the middle.  I love
music, its probably too late to try and be a professional singer at
31 but just being able to finish phrases properly and hold notes
without sneak-a-breath is helpful.  I never realized just how
often I was breathing until yesterday.  Some of the congestion
is back this morning but not like it was.<br>
<br>
She also upgraded me to Advair every 12 hours and downgraded
Albuteral (new brand) to as needed.<br>
<br>
Until next time,<br>
<br>
"Searching"<br>

 

[searchingforanswers]

I FINALLY have an update to report and my login finally worked, I
think <img src="i/expressions/face-icon-small-smile.gif" border="0">  Although what is with the new Java thing?<br>
<br>
I went back to the doctor yesterday and she put me on a nebulizer
(sp?)for 15 minutes then another 15...wow did that make a
difference.  I'm not completely cleared up but I'm breathing
better then I have in a LONG time.  She is sending me for a
chest x-ray probably this evening (the first I've ever had ).
 I guess I've gotten so used to making it without fully
functional lungs, well you just don't feel the difference until you
get a portion of that back.  I actually got through an
entire musical phrase without breathing in the middle.  I love
music, its probably too late to try and be a professional singer at
31 but just being able to finish phrases properly and hold notes
without sneak-a-breath is helpful.  I never realized just how
often I was breathing until yesterday.  Some of the congestion
is back this morning but not like it was.<br>
<br>
She also upgraded me to Advair every 12 hours and downgraded
Albuteral (new brand) to as needed.<br>
<br>
Until next time,<br>
<br>
"Searching"<br>

 

[searchingforanswers]

I FINALLY have an update to report and my login finally worked, I
think <img src="i/expressions/face-icon-small-smile.gif" border="0">  Although what is with the new Java thing?<br>
<br>
I went back to the doctor yesterday and she put me on a nebulizer
(sp?)for 15 minutes then another 15...wow did that make a
difference.  I'm not completely cleared up but I'm breathing
better then I have in a LONG time.  She is sending me for a
chest x-ray probably this evening (the first I've ever had ).
 I guess I've gotten so used to making it without fully
functional lungs, well you just don't feel the difference until you
get a portion of that back.  I actually got through an
entire musical phrase without breathing in the middle.  I love
music, its probably too late to try and be a professional singer at
31 but just being able to finish phrases properly and hold notes
without sneak-a-breath is helpful.  I never realized just how
often I was breathing until yesterday.  Some of the congestion
is back this morning but not like it was.<br>
<br>
She also upgraded me to Advair every 12 hours and downgraded
Albuteral (new brand) to as needed.<br>
<br>
Until next time,<br>
<br>
"Searching"<br>

 

[anonymous]

The nebulizer treatment the doctor gave me has worn off some although I'm pretty sure I'm still better off then I was. The chest x-ray results look resonably good I guess, no evidence of Pnemonia, some air trapping, flattened Diamphram from Bronchitis, and normal looking heart which I admit is a tiny relief.

The advair seems to be helping some and the new inhaler is better but I sure am using it a lot, I'm also still using a lot of vicks vapo rub just to be able to sleep...dunno if that is a good or bad idea but it seemed safer then using decongestant meds with the advair which I'm not sure is safe (should have asked the doc).

I have another appointment in two weeks we will see what happens when I walk in her door STILL less congested then before the treatment but still not coughing up a damn thing and still chronically congested. At least it appears that whether this is somehow only asthma/broncihtis, COPD, CF, or pretty much any resperatory condition a lot of the treatment is the same. With the amount of good one nebulizer treatment did me I really hope she gives me another I like how I felt after it....I just wish it completely lasted.

"Searching"

 

[anonymous]

The nebulizer treatment the doctor gave me has worn off some although I'm pretty sure I'm still better off then I was. The chest x-ray results look resonably good I guess, no evidence of Pnemonia, some air trapping, flattened Diamphram from Bronchitis, and normal looking heart which I admit is a tiny relief.

The advair seems to be helping some and the new inhaler is better but I sure am using it a lot, I'm also still using a lot of vicks vapo rub just to be able to sleep...dunno if that is a good or bad idea but it seemed safer then using decongestant meds with the advair which I'm not sure is safe (should have asked the doc).

I have another appointment in two weeks we will see what happens when I walk in her door STILL less congested then before the treatment but still not coughing up a damn thing and still chronically congested. At least it appears that whether this is somehow only asthma/broncihtis, COPD, CF, or pretty much any resperatory condition a lot of the treatment is the same. With the amount of good one nebulizer treatment did me I really hope she gives me another I like how I felt after it....I just wish it completely lasted.

"Searching"

 

[anonymous]

The nebulizer treatment the doctor gave me has worn off some although I'm pretty sure I'm still better off then I was. The chest x-ray results look resonably good I guess, no evidence of Pnemonia, some air trapping, flattened Diamphram from Bronchitis, and normal looking heart which I admit is a tiny relief.

The advair seems to be helping some and the new inhaler is better but I sure am using it a lot, I'm also still using a lot of vicks vapo rub just to be able to sleep...dunno if that is a good or bad idea but it seemed safer then using decongestant meds with the advair which I'm not sure is safe (should have asked the doc).

I have another appointment in two weeks we will see what happens when I walk in her door STILL less congested then before the treatment but still not coughing up a damn thing and still chronically congested. At least it appears that whether this is somehow only asthma/broncihtis, COPD, CF, or pretty much any resperatory condition a lot of the treatment is the same. With the amount of good one nebulizer treatment did me I really hope she gives me another I like how I felt after it....I just wish it completely lasted.

"Searching"

 

[lilmac7]

Just curious, and this is a gross question but I'll ask anyway, what is the consistency of your mucus? Do you have sinus congestion practically all the time/or not able to smell as well as a "normal" person would and do you have ear trouble - maybe ear infections from time to time or just not able to hear as good as normal? Reason why I ask is that there's a disease that's even more rare than CF but generally not as bad as CF called Immotile Cylia Syndrome in which the cylia in the lungs, sinuses, ears and reproductive organ doesn't work causing a build up of mucus, and generally patients with this notice symptoms later in life than with CF. This disease has no effect on the digestive system but will lead to symptoms so similar to CF (to do with lungs, sinus, ears)that treatment for the disease is practically mirrored from CF as there isn't much studies being done for it because it's so rare. Diagnosing is totally different from CF, they do a biopsy of the sinus and check if the cylia is working by giving it an electrical charge.
Reason I ask for the consistency is because with this disease the consistency of the mucus is actually normal, runny...while in CF it's thick and sticky. This could explain why if you lie down you caugh rather quickly cause the mucus drains fairly fast, with CFers that'll happen too but would take longer as the stuff is much thicker. Women with this disease tend to have difficulty getting pregnant too. Again onset and severity of symptoms vary with people with this disease.

 

[lilmac7]

Just curious, and this is a gross question but I'll ask anyway, what is the consistency of your mucus? Do you have sinus congestion practically all the time/or not able to smell as well as a "normal" person would and do you have ear trouble - maybe ear infections from time to time or just not able to hear as good as normal? Reason why I ask is that there's a disease that's even more rare than CF but generally not as bad as CF called Immotile Cylia Syndrome in which the cylia in the lungs, sinuses, ears and reproductive organ doesn't work causing a build up of mucus, and generally patients with this notice symptoms later in life than with CF. This disease has no effect on the digestive system but will lead to symptoms so similar to CF (to do with lungs, sinus, ears)that treatment for the disease is practically mirrored from CF as there isn't much studies being done for it because it's so rare. Diagnosing is totally different from CF, they do a biopsy of the sinus and check if the cylia is working by giving it an electrical charge.
Reason I ask for the consistency is because with this disease the consistency of the mucus is actually normal, runny...while in CF it's thick and sticky. This could explain why if you lie down you caugh rather quickly cause the mucus drains fairly fast, with CFers that'll happen too but would take longer as the stuff is much thicker. Women with this disease tend to have difficulty getting pregnant too. Again onset and severity of symptoms vary with people with this disease.

 

[lilmac7]

Just curious, and this is a gross question but I'll ask anyway, what is the consistency of your mucus? Do you have sinus congestion practically all the time/or not able to smell as well as a "normal" person would and do you have ear trouble - maybe ear infections from time to time or just not able to hear as good as normal? Reason why I ask is that there's a disease that's even more rare than CF but generally not as bad as CF called Immotile Cylia Syndrome in which the cylia in the lungs, sinuses, ears and reproductive organ doesn't work causing a build up of mucus, and generally patients with this notice symptoms later in life than with CF. This disease has no effect on the digestive system but will lead to symptoms so similar to CF (to do with lungs, sinus, ears)that treatment for the disease is practically mirrored from CF as there isn't much studies being done for it because it's so rare. Diagnosing is totally different from CF, they do a biopsy of the sinus and check if the cylia is working by giving it an electrical charge.
Reason I ask for the consistency is because with this disease the consistency of the mucus is actually normal, runny...while in CF it's thick and sticky. This could explain why if you lie down you caugh rather quickly cause the mucus drains fairly fast, with CFers that'll happen too but would take longer as the stuff is much thicker. Women with this disease tend to have difficulty getting pregnant too. Again onset and severity of symptoms vary with people with this disease.

 

[anonymous]

hmm I'm answering from the remote system so punctuation isn't really happening, sorry about that. I know cf means extra thick mucus but how do you determine if your mucus is 'normal'?

I seem to have sinus congestion pretty constantly, my nose is almost always congested up. As for ears, never had a problem there...my brother was the earache recipiant in the familly growing up, me it was nosebleeds.

Unfortunatly I rarely cough up anything useful the gunk pretty much sits there strangely I actually have some success through sneezing and then blowing ny nose in a certain way that works a bit. It seems to pull the gunk from my throat and chest a bit

Throat clearing in a certain way does some good also. You can really hear the mucus when I do that.

When I try to sleep it not so much coughing that is the problem it feels more like the air getting thicker or like drowning in mucus. its like the congestion and post nasal drip are trying to smother me. some nights are no big deal and some nights even some days are very bad...I really didn't realize just how.bad it was till the neb treatment. I'm so much more aware of it now, where as before well I was breathing hard climbing stairs or walking down the hall...but just a little I had gotten used to thinking that was normal. I'm really not sure how I was getting by except tons of otc help voice traing and a lot of willpower.


searching

 

[anonymous]

hmm I'm answering from the remote system so punctuation isn't really happening, sorry about that. I know cf means extra thick mucus but how do you determine if your mucus is 'normal'?

I seem to have sinus congestion pretty constantly, my nose is almost always congested up. As for ears, never had a problem there...my brother was the earache recipiant in the familly growing up, me it was nosebleeds.

Unfortunatly I rarely cough up anything useful the gunk pretty much sits there strangely I actually have some success through sneezing and then blowing ny nose in a certain way that works a bit. It seems to pull the gunk from my throat and chest a bit

Throat clearing in a certain way does some good also. You can really hear the mucus when I do that.

When I try to sleep it not so much coughing that is the problem it feels more like the air getting thicker or like drowning in mucus. its like the congestion and post nasal drip are trying to smother me. some nights are no big deal and some nights even some days are very bad...I really didn't realize just how.bad it was till the neb treatment. I'm so much more aware of it now, where as before well I was breathing hard climbing stairs or walking down the hall...but just a little I had gotten used to thinking that was normal. I'm really not sure how I was getting by except tons of otc help voice traing and a lot of willpower.


searching

 

[anonymous]

hmm I'm answering from the remote system so punctuation isn't really happening, sorry about that. I know cf means extra thick mucus but how do you determine if your mucus is 'normal'?

I seem to have sinus congestion pretty constantly, my nose is almost always congested up. As for ears, never had a problem there...my brother was the earache recipiant in the familly growing up, me it was nosebleeds.

Unfortunatly I rarely cough up anything useful the gunk pretty much sits there strangely I actually have some success through sneezing and then blowing ny nose in a certain way that works a bit. It seems to pull the gunk from my throat and chest a bit

Throat clearing in a certain way does some good also. You can really hear the mucus when I do that.

When I try to sleep it not so much coughing that is the problem it feels more like the air getting thicker or like drowning in mucus. its like the congestion and post nasal drip are trying to smother me. some nights are no big deal and some nights even some days are very bad...I really didn't realize just how.bad it was till the neb treatment. I'm so much more aware of it now, where as before well I was breathing hard climbing stairs or walking down the hall...but just a little I had gotten used to thinking that was normal. I'm really not sure how I was getting by except tons of otc help voice traing and a lot of willpower.


searching

 

[lilmac7]

well, have a try at this when you're home preferable after nebbing, stack up some pillows and lie on them on your back with them more down toward your but so you're at an angle with your waist higher than your chest. When you exhale do slow exhales pushing as much air out as you can, it will make you want to caugh but try to hold back, do a few of them 'til you feel the stuff gathering and it's really hard to hold back the caugh then take a short sharp breath in - hold it for 2-3 sec and do a forceful exhale through your mouth and that should blow what you gathered up and make you caugh it up. Collect it in a cup or something or even in the sink and check the consistency, should be easy enough to say whether runny or thick and gunky. As I said earlier symptoms will vary from person to person so whereas you may not have ear trouble some people do, same with CF.

 

[lilmac7]

well, have a try at this when you're home preferable after nebbing, stack up some pillows and lie on them on your back with them more down toward your but so you're at an angle with your waist higher than your chest. When you exhale do slow exhales pushing as much air out as you can, it will make you want to caugh but try to hold back, do a few of them 'til you feel the stuff gathering and it's really hard to hold back the caugh then take a short sharp breath in - hold it for 2-3 sec and do a forceful exhale through your mouth and that should blow what you gathered up and make you caugh it up. Collect it in a cup or something or even in the sink and check the consistency, should be easy enough to say whether runny or thick and gunky. As I said earlier symptoms will vary from person to person so whereas you may not have ear trouble some people do, same with CF.

 

[lilmac7]

well, have a try at this when you're home preferable after nebbing, stack up some pillows and lie on them on your back with them more down toward your but so you're at an angle with your waist higher than your chest. When you exhale do slow exhales pushing as much air out as you can, it will make you want to caugh but try to hold back, do a few of them 'til you feel the stuff gathering and it's really hard to hold back the caugh then take a short sharp breath in - hold it for 2-3 sec and do a forceful exhale through your mouth and that should blow what you gathered up and make you caugh it up. Collect it in a cup or something or even in the sink and check the consistency, should be easy enough to say whether runny or thick and gunky. As I said earlier symptoms will vary from person to person so whereas you may not have ear trouble some people do, same with CF.