Searchingforanswers

A

anonymous

New member
Days 4 and 5 update:

Sorry I'm so late posting, I went to work yesterday and just getting through the day took so uch out of me that I pretty much come home and fell right asleep. One piece of good news the company has FINALLY decided to clean the vents and is doing some small things to stop colds being passed in circles around the office. Hopefully that will help me and the other vulnerable indivuals.

On day five I finally started bring up some of the gunk although I've still got a long way to go. I'm eating mostly chicken soup with crushed red pepper, and black table pepper and fresh garlic which seems to help. If anyone wants the exact recipe the special chicken soup in one of the few really good tricks I know. I'm also still taking a lot of vitamins and fluids. I can at least feel some holes in the gunk clogging my left lung since I finally started coughing some of it up (still yellow rather then green thank goodness). The right side is still only slightly congested but as usual the left one is pretty bad but getting better...of course I don't expect to clear it before the next cold but maybe just mabe the combination of a doctor and clean vents will help.

I talked to a coworker (uninsured like almost everyone in the office) but with much more experiance then I have in getting sliding scale services and she gave me a phone number to a low cost clinic near the office. They will charge between 15-70 dollars for the visit so financially things are looking a bit better. I have an appointment on monday but its only with a general practioner they should be able to refer me to to sliding fee specialists though. Now I come back to advise time again...how much should I tell the doctor. Getting an antibiotic or some basic medication will probably be simple, should I be trying for a referal to a pulminologist and/or allergist (or some other sort of doctor), or am I better to get a referal from one of you to a CF center. Should I be persueing both lines of inquiry. BTW I'm jealous of those of you with fully paid healthcare and glad you have that safety net <img src="i/expressions/face-icon-small-smile.gif" border="0">. I'm also curious do the Cf centers only do Cf or would they also take care of most other lung problems/resperatory problems. i.e. could I get tested/treated for CF or a similar resperatory problem at the same place.


BTW I actually do have a log on of sorts it just keeps sending me back to anonymous even when I log in.
 
A

anonymous

New member
Days 4 and 5 update:

Sorry I'm so late posting, I went to work yesterday and just getting through the day took so uch out of me that I pretty much come home and fell right asleep. One piece of good news the company has FINALLY decided to clean the vents and is doing some small things to stop colds being passed in circles around the office. Hopefully that will help me and the other vulnerable indivuals.

On day five I finally started bring up some of the gunk although I've still got a long way to go. I'm eating mostly chicken soup with crushed red pepper, and black table pepper and fresh garlic which seems to help. If anyone wants the exact recipe the special chicken soup in one of the few really good tricks I know. I'm also still taking a lot of vitamins and fluids. I can at least feel some holes in the gunk clogging my left lung since I finally started coughing some of it up (still yellow rather then green thank goodness). The right side is still only slightly congested but as usual the left one is pretty bad but getting better...of course I don't expect to clear it before the next cold but maybe just mabe the combination of a doctor and clean vents will help.

I talked to a coworker (uninsured like almost everyone in the office) but with much more experiance then I have in getting sliding scale services and she gave me a phone number to a low cost clinic near the office. They will charge between 15-70 dollars for the visit so financially things are looking a bit better. I have an appointment on monday but its only with a general practioner they should be able to refer me to to sliding fee specialists though. Now I come back to advise time again...how much should I tell the doctor. Getting an antibiotic or some basic medication will probably be simple, should I be trying for a referal to a pulminologist and/or allergist (or some other sort of doctor), or am I better to get a referal from one of you to a CF center. Should I be persueing both lines of inquiry. BTW I'm jealous of those of you with fully paid healthcare and glad you have that safety net <img src="i/expressions/face-icon-small-smile.gif" border="0">. I'm also curious do the Cf centers only do Cf or would they also take care of most other lung problems/resperatory problems. i.e. could I get tested/treated for CF or a similar resperatory problem at the same place.


BTW I actually do have a log on of sorts it just keeps sending me back to anonymous even when I log in.
 
A

anonymous

New member
hey, I'm glad that you are finally getting some stuff up and also that they are cleaning the vents where you work. It sounds like you are doing what I'd be doing to take care of your health with vitamins and lots of liquids. I'm glad you got an appointment with the general practitioner. As far as how much to tell him, I'd say go for it and see if you can get a referral to a pulmonologist. If you can get a sliding scale cost for seeing a pulmonologist that would be great. The only thing with general practitioners is that they might not give you the proper antibiotic for a CF bacteria. But probably at this point, any antibiotic would be good for you. Maybe you could see if they could refer you to a pulmonologist and make an appointment for a sweat test. Honestly the CF clinics are overrated. If you can find a pulmonologist that you like that you can also afford, that would really be fine. Then they could also test you for the other respiratory diseases, if it isn't CF. I guess you've got the whole weekend to try and clear out your lungs better. I'm not much of a believer in doctors myself. I might think that if you tell a general practitioner about your theory, he might poo poo you telling you that you are too old to be diagnosed with CF. Alot of doctors just don't know anything about CF. I'm just giving you the head's up if he gives you a hard time. Try to insist on a pulmonologist if he gives you a hard time. I'm only speaking from my own experiences because I've always looked too healthy. The doctors also tend to think if you are overweight at all that you couldn't possibly have CF either, not true also. Have you thought of trying that mucinex stuff. I bought some and it has worked for me. It's guiefenesin, a herb that is supposed to thin up the mucos, making it easier to cough up. Alot of CFers have said they've taken it during a cold and found it to help. I get a 5 dollar bottle of it at Cosco, don't know if you are a member.

Anyways, I wish you luck with your appointment on Monday. Please let us know what happens.

Take Care,
michelle
 
A

anonymous

New member
hey, I'm glad that you are finally getting some stuff up and also that they are cleaning the vents where you work. It sounds like you are doing what I'd be doing to take care of your health with vitamins and lots of liquids. I'm glad you got an appointment with the general practitioner. As far as how much to tell him, I'd say go for it and see if you can get a referral to a pulmonologist. If you can get a sliding scale cost for seeing a pulmonologist that would be great. The only thing with general practitioners is that they might not give you the proper antibiotic for a CF bacteria. But probably at this point, any antibiotic would be good for you. Maybe you could see if they could refer you to a pulmonologist and make an appointment for a sweat test. Honestly the CF clinics are overrated. If you can find a pulmonologist that you like that you can also afford, that would really be fine. Then they could also test you for the other respiratory diseases, if it isn't CF. I guess you've got the whole weekend to try and clear out your lungs better. I'm not much of a believer in doctors myself. I might think that if you tell a general practitioner about your theory, he might poo poo you telling you that you are too old to be diagnosed with CF. Alot of doctors just don't know anything about CF. I'm just giving you the head's up if he gives you a hard time. Try to insist on a pulmonologist if he gives you a hard time. I'm only speaking from my own experiences because I've always looked too healthy. The doctors also tend to think if you are overweight at all that you couldn't possibly have CF either, not true also. Have you thought of trying that mucinex stuff. I bought some and it has worked for me. It's guiefenesin, a herb that is supposed to thin up the mucos, making it easier to cough up. Alot of CFers have said they've taken it during a cold and found it to help. I get a 5 dollar bottle of it at Cosco, don't know if you are a member.

Anyways, I wish you luck with your appointment on Monday. Please let us know what happens.

Take Care,
michelle
 
A

anonymous

New member
hey, I'm glad that you are finally getting some stuff up and also that they are cleaning the vents where you work. It sounds like you are doing what I'd be doing to take care of your health with vitamins and lots of liquids. I'm glad you got an appointment with the general practitioner. As far as how much to tell him, I'd say go for it and see if you can get a referral to a pulmonologist. If you can get a sliding scale cost for seeing a pulmonologist that would be great. The only thing with general practitioners is that they might not give you the proper antibiotic for a CF bacteria. But probably at this point, any antibiotic would be good for you. Maybe you could see if they could refer you to a pulmonologist and make an appointment for a sweat test. Honestly the CF clinics are overrated. If you can find a pulmonologist that you like that you can also afford, that would really be fine. Then they could also test you for the other respiratory diseases, if it isn't CF. I guess you've got the whole weekend to try and clear out your lungs better. I'm not much of a believer in doctors myself. I might think that if you tell a general practitioner about your theory, he might poo poo you telling you that you are too old to be diagnosed with CF. Alot of doctors just don't know anything about CF. I'm just giving you the head's up if he gives you a hard time. Try to insist on a pulmonologist if he gives you a hard time. I'm only speaking from my own experiences because I've always looked too healthy. The doctors also tend to think if you are overweight at all that you couldn't possibly have CF either, not true also. Have you thought of trying that mucinex stuff. I bought some and it has worked for me. It's guiefenesin, a herb that is supposed to thin up the mucos, making it easier to cough up. Alot of CFers have said they've taken it during a cold and found it to help. I get a 5 dollar bottle of it at Cosco, don't know if you are a member.

Anyways, I wish you luck with your appointment on Monday. Please let us know what happens.

Take Care,
michelle
 
D

debs2girls

New member
To the original poster, I understand your plight and can sympathize. I find myself at almost 43, in the same boat. I am having a sweat test on the 28th. I too do not have insurance. I wouldnt have really thought anything about it but the lady that set up my test, kind of laughed (which I thought was rude) and said I wouldnt want to get a c/f dx'es without insurance. So that has me thinking now.
Good luck to you.
 
D

debs2girls

New member
To the original poster, I understand your plight and can sympathize. I find myself at almost 43, in the same boat. I am having a sweat test on the 28th. I too do not have insurance. I wouldnt have really thought anything about it but the lady that set up my test, kind of laughed (which I thought was rude) and said I wouldnt want to get a c/f dx'es without insurance. So that has me thinking now.
Good luck to you.
 
D

debs2girls

New member
To the original poster, I understand your plight and can sympathize. I find myself at almost 43, in the same boat. I am having a sweat test on the 28th. I too do not have insurance. I wouldnt have really thought anything about it but the lady that set up my test, kind of laughed (which I thought was rude) and said I wouldnt want to get a c/f dx'es without insurance. So that has me thinking now.
Good luck to you.
 
A

anonymous

New member
The CF Roundtable has a LOT of good information on the topics you have brought up regarding insurance, etc. You can request a subscription, or read some of the articles online.

www.CFroundtable.com

Best wishes. I hope you find answers and find resources to help you out.

-lightNlife
 
A

anonymous

New member
The CF Roundtable has a LOT of good information on the topics you have brought up regarding insurance, etc. You can request a subscription, or read some of the articles online.

www.CFroundtable.com

Best wishes. I hope you find answers and find resources to help you out.

-lightNlife
 
A

anonymous

New member
The CF Roundtable has a LOT of good information on the topics you have brought up regarding insurance, etc. You can request a subscription, or read some of the articles online.

www.CFroundtable.com

Best wishes. I hope you find answers and find resources to help you out.

-lightNlife
 
A

anonymous

New member
I really wouldn't mention CF until you have had insurance long enough that you can COBRA it. Really.
Meanwhile you can get a doc to treat the symptoms. Ask to have a culture taken (say you just are one who wants to know for sure what bug you have) and get the antibiotics.

There are all kinds of nasties running thru my office right now. Lots of folks have what seem like CF sysmptoms (including me and I don't have CF) and have been given antibiotics for the stuff.
 
A

anonymous

New member
I really wouldn't mention CF until you have had insurance long enough that you can COBRA it. Really.
Meanwhile you can get a doc to treat the symptoms. Ask to have a culture taken (say you just are one who wants to know for sure what bug you have) and get the antibiotics.

There are all kinds of nasties running thru my office right now. Lots of folks have what seem like CF sysmptoms (including me and I don't have CF) and have been given antibiotics for the stuff.
 
A

anonymous

New member
I really wouldn't mention CF until you have had insurance long enough that you can COBRA it. Really.
Meanwhile you can get a doc to treat the symptoms. Ask to have a culture taken (say you just are one who wants to know for sure what bug you have) and get the antibiotics.

There are all kinds of nasties running thru my office right now. Lots of folks have what seem like CF sysmptoms (including me and I don't have CF) and have been given antibiotics for the stuff.
 
A

anonymous

New member
Day 7 update:

Well its day 7...last week on sunday I started showing symptoms of this nasty cold. I definately still have it but at least on the mend...of course I'll be truely shocked if I actually lose all the congestion as its been several years since that happened but still wait and see. It looks like my husband finally has the cold also of course it he will likely be less severely hit and well while I'm still shaking it off.

I'm waking up with very stuffed nostrils and a very dry throat every morning though that may or may not have something to do with the air purifier I've been sleeping next to. I'm still pulling out yellow gunk though it is tinged with blood these past few days. When I cough I can still hear the crackle. Other then that I'm eating a bit better and still drinking a lot of fluids and vitamins.

As far as Guefenesin/mussinex I've always had a hard time swallowing pills, my chances of swallowing a pill that large without making myself sick from gulping far too much air and thick liquid at a time are almost nill...I managed it once about two years ago but felt terrible. It took me about 3/4 of a large tumbler to get it swallowed and then the remaining 1/4 to get it "unstuck. The end result was a lot of farting, nausea, and overfull feeling but very little mucus removal.

I have tried various liquids with guefenesin but I seem to need it in combinagtion with pseudoephedrine to really do any good (or maybe its new replacement).

I tried to log in again we will see if it actually works this time (though I'll need a new boardname if/when I get a diagnosis.)

Well tomarrow is doctor apt. as far as what to tell them very mixed responces on here. I'm going to take that suggestion to also post on the adult board about a cf center in the Chicagoland area but there you folks also have basic location <img src="i/expressions/face-icon-small-smile.gif" border="0">

"Searching"
 
A

anonymous

New member
Day 7 update:

Well its day 7...last week on sunday I started showing symptoms of this nasty cold. I definately still have it but at least on the mend...of course I'll be truely shocked if I actually lose all the congestion as its been several years since that happened but still wait and see. It looks like my husband finally has the cold also of course it he will likely be less severely hit and well while I'm still shaking it off.

I'm waking up with very stuffed nostrils and a very dry throat every morning though that may or may not have something to do with the air purifier I've been sleeping next to. I'm still pulling out yellow gunk though it is tinged with blood these past few days. When I cough I can still hear the crackle. Other then that I'm eating a bit better and still drinking a lot of fluids and vitamins.

As far as Guefenesin/mussinex I've always had a hard time swallowing pills, my chances of swallowing a pill that large without making myself sick from gulping far too much air and thick liquid at a time are almost nill...I managed it once about two years ago but felt terrible. It took me about 3/4 of a large tumbler to get it swallowed and then the remaining 1/4 to get it "unstuck. The end result was a lot of farting, nausea, and overfull feeling but very little mucus removal.

I have tried various liquids with guefenesin but I seem to need it in combinagtion with pseudoephedrine to really do any good (or maybe its new replacement).

I tried to log in again we will see if it actually works this time (though I'll need a new boardname if/when I get a diagnosis.)

Well tomarrow is doctor apt. as far as what to tell them very mixed responces on here. I'm going to take that suggestion to also post on the adult board about a cf center in the Chicagoland area but there you folks also have basic location <img src="i/expressions/face-icon-small-smile.gif" border="0">

"Searching"
 
A

anonymous

New member
Day 7 update:

Well its day 7...last week on sunday I started showing symptoms of this nasty cold. I definately still have it but at least on the mend...of course I'll be truely shocked if I actually lose all the congestion as its been several years since that happened but still wait and see. It looks like my husband finally has the cold also of course it he will likely be less severely hit and well while I'm still shaking it off.

I'm waking up with very stuffed nostrils and a very dry throat every morning though that may or may not have something to do with the air purifier I've been sleeping next to. I'm still pulling out yellow gunk though it is tinged with blood these past few days. When I cough I can still hear the crackle. Other then that I'm eating a bit better and still drinking a lot of fluids and vitamins.

As far as Guefenesin/mussinex I've always had a hard time swallowing pills, my chances of swallowing a pill that large without making myself sick from gulping far too much air and thick liquid at a time are almost nill...I managed it once about two years ago but felt terrible. It took me about 3/4 of a large tumbler to get it swallowed and then the remaining 1/4 to get it "unstuck. The end result was a lot of farting, nausea, and overfull feeling but very little mucus removal.

I have tried various liquids with guefenesin but I seem to need it in combinagtion with pseudoephedrine to really do any good (or maybe its new replacement).

I tried to log in again we will see if it actually works this time (though I'll need a new boardname if/when I get a diagnosis.)

Well tomarrow is doctor apt. as far as what to tell them very mixed responces on here. I'm going to take that suggestion to also post on the adult board about a cf center in the Chicagoland area but there you folks also have basic location <img src="i/expressions/face-icon-small-smile.gif" border="0">

"Searching"
 
L

LouLou

New member
If you have insurance you can't be denied insurance so it is in your best interest to become insured immediately...before getting any testing. Insurance or not your medical records are public to the insurance co. when they look into whether or not to insure you. You might want to talk with Beth Sufian (lawyer in TX with CF) who will be able to tell you your rights, etc. In terms of disclosing to employers - you legally don't have to and very, very few would ever ever discuss this during an interview especially since you aren't asking for special priviledges. Job discrimination happens. Prove your worth and then tell them. In terms of a physical for health ins. Back to what I said before if you have insurance they can't discriminate but if you didn't and then did the physical you would have to tell them about the CF and they would likely put a 6 mo. pre-exisiting clause on it before you could get any coverage for it. Like I said, better to have insurance then (as I understand) they aren't allowed to do pre-existing clauses.

Step back:
1) two options: 1a)get your mom and dad tested genetically to see if they are carriers. If they aren't carriers you can't have cf. 1b) get medical insurance (major medical might be all you need to make you 'insurable' talk with Beth)

2) if you choose 1b then next step is testing (genetically is the final answer while sweat could say negative while you actually could have cf). if you choose 1a depending on the results of your parents you should pursue further testing or rest easy knowing it isn't possible for you to have cf.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.sufianpassamano.com/whiteframe1.htm
">http://www.sufianpassamano.com/whiteframe1.htm
</a>
Good luck!
 
L

LouLou

New member
If you have insurance you can't be denied insurance so it is in your best interest to become insured immediately...before getting any testing. Insurance or not your medical records are public to the insurance co. when they look into whether or not to insure you. You might want to talk with Beth Sufian (lawyer in TX with CF) who will be able to tell you your rights, etc. In terms of disclosing to employers - you legally don't have to and very, very few would ever ever discuss this during an interview especially since you aren't asking for special priviledges. Job discrimination happens. Prove your worth and then tell them. In terms of a physical for health ins. Back to what I said before if you have insurance they can't discriminate but if you didn't and then did the physical you would have to tell them about the CF and they would likely put a 6 mo. pre-exisiting clause on it before you could get any coverage for it. Like I said, better to have insurance then (as I understand) they aren't allowed to do pre-existing clauses.

Step back:
1) two options: 1a)get your mom and dad tested genetically to see if they are carriers. If they aren't carriers you can't have cf. 1b) get medical insurance (major medical might be all you need to make you 'insurable' talk with Beth)

2) if you choose 1b then next step is testing (genetically is the final answer while sweat could say negative while you actually could have cf). if you choose 1a depending on the results of your parents you should pursue further testing or rest easy knowing it isn't possible for you to have cf.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.sufianpassamano.com/whiteframe1.htm
">http://www.sufianpassamano.com/whiteframe1.htm
</a>
Good luck!
 
L

LouLou

New member
If you have insurance you can't be denied insurance so it is in your best interest to become insured immediately...before getting any testing. Insurance or not your medical records are public to the insurance co. when they look into whether or not to insure you. You might want to talk with Beth Sufian (lawyer in TX with CF) who will be able to tell you your rights, etc. In terms of disclosing to employers - you legally don't have to and very, very few would ever ever discuss this during an interview especially since you aren't asking for special priviledges. Job discrimination happens. Prove your worth and then tell them. In terms of a physical for health ins. Back to what I said before if you have insurance they can't discriminate but if you didn't and then did the physical you would have to tell them about the CF and they would likely put a 6 mo. pre-exisiting clause on it before you could get any coverage for it. Like I said, better to have insurance then (as I understand) they aren't allowed to do pre-existing clauses.

Step back:
1) two options: 1a)get your mom and dad tested genetically to see if they are carriers. If they aren't carriers you can't have cf. 1b) get medical insurance (major medical might be all you need to make you 'insurable' talk with Beth)

2) if you choose 1b then next step is testing (genetically is the final answer while sweat could say negative while you actually could have cf). if you choose 1a depending on the results of your parents you should pursue further testing or rest easy knowing it isn't possible for you to have cf.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.sufianpassamano.com/whiteframe1.htm
">http://www.sufianpassamano.com/whiteframe1.htm
</a>
Good luck!
 
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