Update to: I reside in "CF House" but in different room!

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greatbay

New member
Just to update everyone on having CF test....had sweat test and it came back possitive for CF...Pulmonary doc has apologized quite a bit for not taking my concerns about CF seriously...I hope it caused him some of the sleepless nights it caused me with his not believing how I felt...
Wasn't here to give update sooner as I was feeling lousy and could hardly drag myself to doc's and alas, sputum showed another flareup of pseudomonas so I am on cipro again...for the umpteenth time..
Today, felt much better but still slept till 2 PM that is why I am wide awake at such a late hour.
Now all children are going in to be retested as 1 has just been diagnosed with irritable bowel syndrome (24 yr old) and oldest with also a pseudomonas infection (37yrold)
I sure do not want them to go thru years of not knowing like I have.
Good wishes for all.
 
G

greatbay

New member
Just to update everyone on having CF test....had sweat test and it came back possitive for CF...Pulmonary doc has apologized quite a bit for not taking my concerns about CF seriously...I hope it caused him some of the sleepless nights it caused me with his not believing how I felt...
Wasn't here to give update sooner as I was feeling lousy and could hardly drag myself to doc's and alas, sputum showed another flareup of pseudomonas so I am on cipro again...for the umpteenth time..
Today, felt much better but still slept till 2 PM that is why I am wide awake at such a late hour.
Now all children are going in to be retested as 1 has just been diagnosed with irritable bowel syndrome (24 yr old) and oldest with also a pseudomonas infection (37yrold)
I sure do not want them to go thru years of not knowing like I have.
Good wishes for all.
 
G

greatbay

New member
Just to update everyone on having CF test....had sweat test and it came back possitive for CF...Pulmonary doc has apologized quite a bit for not taking my concerns about CF seriously...I hope it caused him some of the sleepless nights it caused me with his not believing how I felt...
Wasn't here to give update sooner as I was feeling lousy and could hardly drag myself to doc's and alas, sputum showed another flareup of pseudomonas so I am on cipro again...for the umpteenth time..
Today, felt much better but still slept till 2 PM that is why I am wide awake at such a late hour.
Now all children are going in to be retested as 1 has just been diagnosed with irritable bowel syndrome (24 yr old) and oldest with also a pseudomonas infection (37yrold)
I sure do not want them to go thru years of not knowing like I have.
Good wishes for all.
 
J

JazzysMom

New member
Update to: I reside in "CF House

Well I guess I have to say congratulations in a morbid kind of way. Its terrible when things are so bad with someones health that we actually want an aweful dx confirmed. BUT at least now you know for sure and can get back on track. As far as you not feeling well and going back on Cipro. BE CAREFUL.....its very possible you are building an immunity to it. Maybe you should bring in the big guns like iv meds to get this flareup under control for one good time to start off right!
 
J

JazzysMom

New member
Update to: I reside in "CF House

Well I guess I have to say congratulations in a morbid kind of way. Its terrible when things are so bad with someones health that we actually want an aweful dx confirmed. BUT at least now you know for sure and can get back on track. As far as you not feeling well and going back on Cipro. BE CAREFUL.....its very possible you are building an immunity to it. Maybe you should bring in the big guns like iv meds to get this flareup under control for one good time to start off right!
 
J

JazzysMom

New member
Update to: I reside in "CF House

Well I guess I have to say congratulations in a morbid kind of way. Its terrible when things are so bad with someones health that we actually want an aweful dx confirmed. BUT at least now you know for sure and can get back on track. As far as you not feeling well and going back on Cipro. BE CAREFUL.....its very possible you are building an immunity to it. Maybe you should bring in the big guns like iv meds to get this flareup under control for one good time to start off right!
 
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NoExcuses

New member
Update to: I reside in

I hope that you seek out another pulmonologist for your CF care.

If a physician can be so resistant to testing for CF, I can't imagine what else he would miss in your care.....

Not all physicians are created equally. I'd find another doc.
 
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NoExcuses

New member
Update to: I reside in

I hope that you seek out another pulmonologist for your CF care.

If a physician can be so resistant to testing for CF, I can't imagine what else he would miss in your care.....

Not all physicians are created equally. I'd find another doc.
 
N

NoExcuses

New member
Update to: I reside in

I hope that you seek out another pulmonologist for your CF care.

If a physician can be so resistant to testing for CF, I can't imagine what else he would miss in your care.....

Not all physicians are created equally. I'd find another doc.
 
D

Diane

New member
Update to: I reside in

Im glad you at least know what you have now, rather than always wondering. It's good that you found this site, you will find it very helpful. I have to agree with Amy on finding a new Dr. When a doctor stops listening to his patient, and resists the reequest for doing a test, it is time for a new Dr.
 
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Diane

New member
Update to: I reside in

Im glad you at least know what you have now, rather than always wondering. It's good that you found this site, you will find it very helpful. I have to agree with Amy on finding a new Dr. When a doctor stops listening to his patient, and resists the reequest for doing a test, it is time for a new Dr.
 
D

Diane

New member
Update to: I reside in

Im glad you at least know what you have now, rather than always wondering. It's good that you found this site, you will find it very helpful. I have to agree with Amy on finding a new Dr. When a doctor stops listening to his patient, and resists the reequest for doing a test, it is time for a new Dr.
 
B

Breezy

New member
Update to: I reside in

I'm so glad to hear you've recieved a proper diagnoses!!!!! I can't imagine how it feels to know instinctively that you have a disease, but your doctor will not confirm it! It's sad that you had to go through so much BS just to get a proper diagnoses, but i'm happy to hear that you've gotten it and are being treated properly! I hope you feel better!
 
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Breezy

New member
Update to: I reside in

I'm so glad to hear you've recieved a proper diagnoses!!!!! I can't imagine how it feels to know instinctively that you have a disease, but your doctor will not confirm it! It's sad that you had to go through so much BS just to get a proper diagnoses, but i'm happy to hear that you've gotten it and are being treated properly! I hope you feel better!
 
B

Breezy

New member
Update to: I reside in

I'm so glad to hear you've recieved a proper diagnoses!!!!! I can't imagine how it feels to know instinctively that you have a disease, but your doctor will not confirm it! It's sad that you had to go through so much BS just to get a proper diagnoses, but i'm happy to hear that you've gotten it and are being treated properly! I hope you feel better!
 
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Scarlett81

New member
Update to: I reside in

Sometimes you just want to know something, even if its not the best answer, so I'm glad for that. I think you have several reasons to seek another doc, though I completely acknowledge you didn't ask anyone's opinion on this and you may like this pulmonologist!-But as a caring observer I also think you should start the search for another one. Not only b/c of him not listening to you and not taking your legitimate concerns seriously-but I feel that just as importantly, b/c you have been given a definate cf diagnosis, the best place for you is with an actual cf clinic/center. cff.org-they're all listed there.
best to you.
 
S

Scarlett81

New member
Update to: I reside in

Sometimes you just want to know something, even if its not the best answer, so I'm glad for that. I think you have several reasons to seek another doc, though I completely acknowledge you didn't ask anyone's opinion on this and you may like this pulmonologist!-But as a caring observer I also think you should start the search for another one. Not only b/c of him not listening to you and not taking your legitimate concerns seriously-but I feel that just as importantly, b/c you have been given a definate cf diagnosis, the best place for you is with an actual cf clinic/center. cff.org-they're all listed there.
best to you.
 
S

Scarlett81

New member
Update to: I reside in

Sometimes you just want to know something, even if its not the best answer, so I'm glad for that. I think you have several reasons to seek another doc, though I completely acknowledge you didn't ask anyone's opinion on this and you may like this pulmonologist!-But as a caring observer I also think you should start the search for another one. Not only b/c of him not listening to you and not taking your legitimate concerns seriously-but I feel that just as importantly, b/c you have been given a definate cf diagnosis, the best place for you is with an actual cf clinic/center. cff.org-they're all listed there.
best to you.
 
M

mom2lillian

New member
Update to: I reside in

I am sorry you are feeling lousy and I agree that you need to go on a different antibiotic as there is a very high chance you are resistant by now especially if you keep getting flare-ups - did this pulmonologist do a culture on you? I also think that although you did not solicit the advice I would strongly urge you to get a new doc, I have had really bad and really good and it makes all difference in world. I will keep your children in my htoughts.
 
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mom2lillian

New member
Update to: I reside in

I am sorry you are feeling lousy and I agree that you need to go on a different antibiotic as there is a very high chance you are resistant by now especially if you keep getting flare-ups - did this pulmonologist do a culture on you? I also think that although you did not solicit the advice I would strongly urge you to get a new doc, I have had really bad and really good and it makes all difference in world. I will keep your children in my htoughts.
 
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