Newly diagnosed...for the 2nd time in 28yrs

V

Veneicia

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alyssa</b></i>



Did you say if you got the genetic testing done yet? Have they told you if they will be testing for all the CF genes? Also do you know yet if you still have the psuedomonas bacteria in your sinuses or not? Do you cough up any mucus that they can test for psuedomonas? Have you have a throat culture done?



Best wishes - please keep us posted.</end quote></div>

Hi Alyssa- Wow- you really know ALOT about this subject! So, I have to say thank you! The only thing I have been told so far is, I go in for genetics on Monday- so I'm not exactly sure if they plan to do all....or just a couple. My surgeon told me to tell them when they wanted to do the nasal biopsy he would be more than willing to do it and to make sure to call him...so I don't even know why they even need or do a biopsy. As far as still having pseudonomas...I'm not sure of that either- Imean I had it, was on antibiotics for 20days I think, and then only had 1 sinus infection after that since...so I'm actually going on 2months w/o a sinus infection which is HUGE for me(yeahhhhhh!) So they haven't done another swab since the first one- is this something they should be or will be doing on a regular basis now? They have not preformed a throat culture as of yet and it's actually good in a sense that I do get upper respitory infection- but not like I do the sinus infections- but the one thing I have had a problem with and I have been trying to describe to the Dr's is this and I'm not sure if I'm saying this right for ppl to understand but something (sinus?) in the roof of my mouth back by my throat gets extremely coated and thick- if I lay down sometimes- I literally feel like I'm suffocating. I do get mucas that I cough up occationally- but I figured it was from smoking....I know a CF person's worst enemy! I have recently been put on the patch to try and quit, and I was doing ok, until I started finding out my test results. I guess, I will just have to sit back and wait for Monday to find out more and see what they plan to do. How long does it take to get the genetics test back?

Thank you again for everything!
Your newly founded friend,
Veneicia
 
V

Veneicia

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alyssa</b></i>



Did you say if you got the genetic testing done yet? Have they told you if they will be testing for all the CF genes? Also do you know yet if you still have the psuedomonas bacteria in your sinuses or not? Do you cough up any mucus that they can test for psuedomonas? Have you have a throat culture done?



Best wishes - please keep us posted.</end quote></div>

Hi Alyssa- Wow- you really know ALOT about this subject! So, I have to say thank you! The only thing I have been told so far is, I go in for genetics on Monday- so I'm not exactly sure if they plan to do all....or just a couple. My surgeon told me to tell them when they wanted to do the nasal biopsy he would be more than willing to do it and to make sure to call him...so I don't even know why they even need or do a biopsy. As far as still having pseudonomas...I'm not sure of that either- Imean I had it, was on antibiotics for 20days I think, and then only had 1 sinus infection after that since...so I'm actually going on 2months w/o a sinus infection which is HUGE for me(yeahhhhhh!) So they haven't done another swab since the first one- is this something they should be or will be doing on a regular basis now? They have not preformed a throat culture as of yet and it's actually good in a sense that I do get upper respitory infection- but not like I do the sinus infections- but the one thing I have had a problem with and I have been trying to describe to the Dr's is this and I'm not sure if I'm saying this right for ppl to understand but something (sinus?) in the roof of my mouth back by my throat gets extremely coated and thick- if I lay down sometimes- I literally feel like I'm suffocating. I do get mucas that I cough up occationally- but I figured it was from smoking....I know a CF person's worst enemy! I have recently been put on the patch to try and quit, and I was doing ok, until I started finding out my test results. I guess, I will just have to sit back and wait for Monday to find out more and see what they plan to do. How long does it take to get the genetics test back?

Thank you again for everything!
Your newly founded friend,
Veneicia
 
V

Veneicia

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alyssa</b></i>



Did you say if you got the genetic testing done yet? Have they told you if they will be testing for all the CF genes? Also do you know yet if you still have the psuedomonas bacteria in your sinuses or not? Do you cough up any mucus that they can test for psuedomonas? Have you have a throat culture done?



Best wishes - please keep us posted.</end quote></div>

Hi Alyssa- Wow- you really know ALOT about this subject! So, I have to say thank you! The only thing I have been told so far is, I go in for genetics on Monday- so I'm not exactly sure if they plan to do all....or just a couple. My surgeon told me to tell them when they wanted to do the nasal biopsy he would be more than willing to do it and to make sure to call him...so I don't even know why they even need or do a biopsy. As far as still having pseudonomas...I'm not sure of that either- Imean I had it, was on antibiotics for 20days I think, and then only had 1 sinus infection after that since...so I'm actually going on 2months w/o a sinus infection which is HUGE for me(yeahhhhhh!) So they haven't done another swab since the first one- is this something they should be or will be doing on a regular basis now? They have not preformed a throat culture as of yet and it's actually good in a sense that I do get upper respitory infection- but not like I do the sinus infections- but the one thing I have had a problem with and I have been trying to describe to the Dr's is this and I'm not sure if I'm saying this right for ppl to understand but something (sinus?) in the roof of my mouth back by my throat gets extremely coated and thick- if I lay down sometimes- I literally feel like I'm suffocating. I do get mucas that I cough up occationally- but I figured it was from smoking....I know a CF person's worst enemy! I have recently been put on the patch to try and quit, and I was doing ok, until I started finding out my test results. I guess, I will just have to sit back and wait for Monday to find out more and see what they plan to do. How long does it take to get the genetics test back?

Thank you again for everything!
Your newly founded friend,
Veneicia
 
V

Veneicia

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alyssa</b></i>



Did you say if you got the genetic testing done yet? Have they told you if they will be testing for all the CF genes? Also do you know yet if you still have the psuedomonas bacteria in your sinuses or not? Do you cough up any mucus that they can test for psuedomonas? Have you have a throat culture done?



Best wishes - please keep us posted.</end quote>

Hi Alyssa- Wow- you really know ALOT about this subject! So, I have to say thank you! The only thing I have been told so far is, I go in for genetics on Monday- so I'm not exactly sure if they plan to do all....or just a couple. My surgeon told me to tell them when they wanted to do the nasal biopsy he would be more than willing to do it and to make sure to call him...so I don't even know why they even need or do a biopsy. As far as still having pseudonomas...I'm not sure of that either- Imean I had it, was on antibiotics for 20days I think, and then only had 1 sinus infection after that since...so I'm actually going on 2months w/o a sinus infection which is HUGE for me(yeahhhhhh!) So they haven't done another swab since the first one- is this something they should be or will be doing on a regular basis now? They have not preformed a throat culture as of yet and it's actually good in a sense that I do get upper respitory infection- but not like I do the sinus infections- but the one thing I have had a problem with and I have been trying to describe to the Dr's is this and I'm not sure if I'm saying this right for ppl to understand but something (sinus?) in the roof of my mouth back by my throat gets extremely coated and thick- if I lay down sometimes- I literally feel like I'm suffocating. I do get mucas that I cough up occationally- but I figured it was from smoking....I know a CF person's worst enemy! I have recently been put on the patch to try and quit, and I was doing ok, until I started finding out my test results. I guess, I will just have to sit back and wait for Monday to find out more and see what they plan to do. How long does it take to get the genetics test back?

Thank you again for everything!
Your newly founded friend,
Veneicia
 
V

Veneicia

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alyssa</b></i>



Did you say if you got the genetic testing done yet? Have they told you if they will be testing for all the CF genes? Also do you know yet if you still have the psuedomonas bacteria in your sinuses or not? Do you cough up any mucus that they can test for psuedomonas? Have you have a throat culture done?



Best wishes - please keep us posted.</end quote>

Hi Alyssa- Wow- you really know ALOT about this subject! So, I have to say thank you! The only thing I have been told so far is, I go in for genetics on Monday- so I'm not exactly sure if they plan to do all....or just a couple. My surgeon told me to tell them when they wanted to do the nasal biopsy he would be more than willing to do it and to make sure to call him...so I don't even know why they even need or do a biopsy. As far as still having pseudonomas...I'm not sure of that either- Imean I had it, was on antibiotics for 20days I think, and then only had 1 sinus infection after that since...so I'm actually going on 2months w/o a sinus infection which is HUGE for me(yeahhhhhh!) So they haven't done another swab since the first one- is this something they should be or will be doing on a regular basis now? They have not preformed a throat culture as of yet and it's actually good in a sense that I do get upper respitory infection- but not like I do the sinus infections- but the one thing I have had a problem with and I have been trying to describe to the Dr's is this and I'm not sure if I'm saying this right for ppl to understand but something (sinus?) in the roof of my mouth back by my throat gets extremely coated and thick- if I lay down sometimes- I literally feel like I'm suffocating. I do get mucas that I cough up occationally- but I figured it was from smoking....I know a CF person's worst enemy! I have recently been put on the patch to try and quit, and I was doing ok, until I started finding out my test results. I guess, I will just have to sit back and wait for Monday to find out more and see what they plan to do. How long does it take to get the genetics test back?

Thank you again for everything!
Your newly founded friend,
Veneicia
 
R

rvm1212

New member
Hi Veneicia,

My boyfriend is doing very well since diagnosis and starting cf treatment.
He started doing respiratory therapy (autogenic drenage, but in us mostly do the vest, we are probably going to buy it this year), he also started exercising more often (30-40 minutes per day of elliptica 5 times/week). He hasn´t started any aerosol therapy yet (hipertonic saline/pulmozime) because they say he doesn´t need it since he has minimum lung damage (we´ll ask again in our next visit). He takes an inhaler (salmeterol/fluticasone) twice a day, and oral antibiotics when needed (increase sputum, cough) for 14 days. Last year he was on them 4 times.
When he has a flare up he has increased cough for three days and after starting oral antibiotics goes back to baseline, no cough and feeling great.
His pulmonary funtion is normal (94%).
You don´t need a nasal byopsy to diagnose cf, but they may do nasal potentials? (translation to english???) they do it in some centers when they have doubts about the diagnosis.
Nasal byopsy can be done to exclude primary cilliar dyscinesia, another illness where the cillia of the airways don´t move right and causes symptons similar to cf (chronic sinusitis, bronchiectasies etc..).
My boyfriend sweet test was 67, but first one was negative.
Well, sorry this was so long and hope it´s easy to understand. I´m from spain and only speak english in this forum <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

rvm1212

New member
Hi Veneicia,

My boyfriend is doing very well since diagnosis and starting cf treatment.
He started doing respiratory therapy (autogenic drenage, but in us mostly do the vest, we are probably going to buy it this year), he also started exercising more often (30-40 minutes per day of elliptica 5 times/week). He hasn´t started any aerosol therapy yet (hipertonic saline/pulmozime) because they say he doesn´t need it since he has minimum lung damage (we´ll ask again in our next visit). He takes an inhaler (salmeterol/fluticasone) twice a day, and oral antibiotics when needed (increase sputum, cough) for 14 days. Last year he was on them 4 times.
When he has a flare up he has increased cough for three days and after starting oral antibiotics goes back to baseline, no cough and feeling great.
His pulmonary funtion is normal (94%).
You don´t need a nasal byopsy to diagnose cf, but they may do nasal potentials? (translation to english???) they do it in some centers when they have doubts about the diagnosis.
Nasal byopsy can be done to exclude primary cilliar dyscinesia, another illness where the cillia of the airways don´t move right and causes symptons similar to cf (chronic sinusitis, bronchiectasies etc..).
My boyfriend sweet test was 67, but first one was negative.
Well, sorry this was so long and hope it´s easy to understand. I´m from spain and only speak english in this forum <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

rvm1212

New member
Hi Veneicia,

My boyfriend is doing very well since diagnosis and starting cf treatment.
He started doing respiratory therapy (autogenic drenage, but in us mostly do the vest, we are probably going to buy it this year), he also started exercising more often (30-40 minutes per day of elliptica 5 times/week). He hasn´t started any aerosol therapy yet (hipertonic saline/pulmozime) because they say he doesn´t need it since he has minimum lung damage (we´ll ask again in our next visit). He takes an inhaler (salmeterol/fluticasone) twice a day, and oral antibiotics when needed (increase sputum, cough) for 14 days. Last year he was on them 4 times.
When he has a flare up he has increased cough for three days and after starting oral antibiotics goes back to baseline, no cough and feeling great.
His pulmonary funtion is normal (94%).
You don´t need a nasal byopsy to diagnose cf, but they may do nasal potentials? (translation to english???) they do it in some centers when they have doubts about the diagnosis.
Nasal byopsy can be done to exclude primary cilliar dyscinesia, another illness where the cillia of the airways don´t move right and causes symptons similar to cf (chronic sinusitis, bronchiectasies etc..).
My boyfriend sweet test was 67, but first one was negative.
Well, sorry this was so long and hope it´s easy to understand. I´m from spain and only speak english in this forum <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

rvm1212

New member
Hi Veneicia,

My boyfriend is doing very well since diagnosis and starting cf treatment.
He started doing respiratory therapy (autogenic drenage, but in us mostly do the vest, we are probably going to buy it this year), he also started exercising more often (30-40 minutes per day of elliptica 5 times/week). He hasn´t started any aerosol therapy yet (hipertonic saline/pulmozime) because they say he doesn´t need it since he has minimum lung damage (we´ll ask again in our next visit). He takes an inhaler (salmeterol/fluticasone) twice a day, and oral antibiotics when needed (increase sputum, cough) for 14 days. Last year he was on them 4 times.
When he has a flare up he has increased cough for three days and after starting oral antibiotics goes back to baseline, no cough and feeling great.
His pulmonary funtion is normal (94%).
You don´t need a nasal byopsy to diagnose cf, but they may do nasal potentials? (translation to english???) they do it in some centers when they have doubts about the diagnosis.
Nasal byopsy can be done to exclude primary cilliar dyscinesia, another illness where the cillia of the airways don´t move right and causes symptons similar to cf (chronic sinusitis, bronchiectasies etc..).
My boyfriend sweet test was 67, but first one was negative.
Well, sorry this was so long and hope it´s easy to understand. I´m from spain and only speak english in this forum <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

rvm1212

New member
Hi Veneicia,

My boyfriend is doing very well since diagnosis and starting cf treatment.
He started doing respiratory therapy (autogenic drenage, but in us mostly do the vest, we are probably going to buy it this year), he also started exercising more often (30-40 minutes per day of elliptica 5 times/week). He hasn´t started any aerosol therapy yet (hipertonic saline/pulmozime) because they say he doesn´t need it since he has minimum lung damage (we´ll ask again in our next visit). He takes an inhaler (salmeterol/fluticasone) twice a day, and oral antibiotics when needed (increase sputum, cough) for 14 days. Last year he was on them 4 times.
When he has a flare up he has increased cough for three days and after starting oral antibiotics goes back to baseline, no cough and feeling great.
His pulmonary funtion is normal (94%).
You don´t need a nasal byopsy to diagnose cf, but they may do nasal potentials? (translation to english???) they do it in some centers when they have doubts about the diagnosis.
Nasal byopsy can be done to exclude primary cilliar dyscinesia, another illness where the cillia of the airways don´t move right and causes symptons similar to cf (chronic sinusitis, bronchiectasies etc..).
My boyfriend sweet test was 67, but first one was negative.
Well, sorry this was so long and hope it´s easy to understand. I´m from spain and only speak english in this forum <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
V

Veneicia

New member
Ok Everyone~ The BIG day came and is now almost gone. Let me tell you, I live 46mi away from the CF clinic, and it's been snowing here (not much) but it's in the single digits- so I had to leave my house by 6:30 to arrive there on time. I get in and the Nurse practitioner had told me the Doc. called in sick.....omg- I was about to pass out! She asked if I wanted to stay- they had so much preliminary work to do and I said- uh ya! I didn't mean for it to come out like that but I'm thinking...was that a trick question. Ok...so this is how it went....

The NURSE stated they could not give me the direct diagnosis b/c the Doc. wasn't there...ok whatever- she took my vitals and informed me of my newly founded team...now just by saying that- wouldn't it throw up a flag??? Well it did me- so she left and in comes.....

The PRACTITIONER....very nice lady- made me laugh, saw me cry, took all my info I then asked her what her personal OP was regarding my case (and she's old)(er)...So she told me how she had been in this field for many years...and let's face it- I have seen many practitioners who are ALOT better and more thorough than A LOT of Docs out there- but anyways she said.....
Without knowing the results of the DNA test, I'm ging to say you fit the profile of a CF patient. B/c of everything I had stated in my orig. post., and also b/c of my chloride #'s, the fact I had a hard time conceiving (even though thats mainly a male trait), and she thinks my family is in denial re: the orgins...maybe....maybe not, IDK:/ So she said she is writing all of my stuff (x-rays, blood work, etc.) out with CF diagnosis on it. They are doing DNA against 89 defects right now, she said b/c of insurance, they have to start off small and work their way up- so she said once those are in- she will send me back to have the rest checked. She did say on a positive note that I'm doing something right to be here 34yrs. Ok, so she left the room and the.....

Breathing lady came in......Ohhhhhhhh how fun that was saying H's from the stomach...over and over. LET ME JUST TELL YOU ALL SOMETHING....I feel worse now- than when i went in this morning b/c of what the respitory lady was having me do- my chest feels extremely tight and i'm wheezing and of course I have no inhaler until tomorrow.

So after that the Practitioner came back in and told me how I need to make an appt in 4weeks and they should have the DNA test back.

So with all that said- I'm going to bed but I have to ask...with all the team players here- why do they have you meet with Social Workers???

Have a gn everyone!

Veneicia
 
V

Veneicia

New member
Ok Everyone~ The BIG day came and is now almost gone. Let me tell you, I live 46mi away from the CF clinic, and it's been snowing here (not much) but it's in the single digits- so I had to leave my house by 6:30 to arrive there on time. I get in and the Nurse practitioner had told me the Doc. called in sick.....omg- I was about to pass out! She asked if I wanted to stay- they had so much preliminary work to do and I said- uh ya! I didn't mean for it to come out like that but I'm thinking...was that a trick question. Ok...so this is how it went....

The NURSE stated they could not give me the direct diagnosis b/c the Doc. wasn't there...ok whatever- she took my vitals and informed me of my newly founded team...now just by saying that- wouldn't it throw up a flag??? Well it did me- so she left and in comes.....

The PRACTITIONER....very nice lady- made me laugh, saw me cry, took all my info I then asked her what her personal OP was regarding my case (and she's old)(er)...So she told me how she had been in this field for many years...and let's face it- I have seen many practitioners who are ALOT better and more thorough than A LOT of Docs out there- but anyways she said.....
Without knowing the results of the DNA test, I'm ging to say you fit the profile of a CF patient. B/c of everything I had stated in my orig. post., and also b/c of my chloride #'s, the fact I had a hard time conceiving (even though thats mainly a male trait), and she thinks my family is in denial re: the orgins...maybe....maybe not, IDK:/ So she said she is writing all of my stuff (x-rays, blood work, etc.) out with CF diagnosis on it. They are doing DNA against 89 defects right now, she said b/c of insurance, they have to start off small and work their way up- so she said once those are in- she will send me back to have the rest checked. She did say on a positive note that I'm doing something right to be here 34yrs. Ok, so she left the room and the.....

Breathing lady came in......Ohhhhhhhh how fun that was saying H's from the stomach...over and over. LET ME JUST TELL YOU ALL SOMETHING....I feel worse now- than when i went in this morning b/c of what the respitory lady was having me do- my chest feels extremely tight and i'm wheezing and of course I have no inhaler until tomorrow.

So after that the Practitioner came back in and told me how I need to make an appt in 4weeks and they should have the DNA test back.

So with all that said- I'm going to bed but I have to ask...with all the team players here- why do they have you meet with Social Workers???

Have a gn everyone!

Veneicia
 
V

Veneicia

New member
Ok Everyone~ The BIG day came and is now almost gone. Let me tell you, I live 46mi away from the CF clinic, and it's been snowing here (not much) but it's in the single digits- so I had to leave my house by 6:30 to arrive there on time. I get in and the Nurse practitioner had told me the Doc. called in sick.....omg- I was about to pass out! She asked if I wanted to stay- they had so much preliminary work to do and I said- uh ya! I didn't mean for it to come out like that but I'm thinking...was that a trick question. Ok...so this is how it went....

The NURSE stated they could not give me the direct diagnosis b/c the Doc. wasn't there...ok whatever- she took my vitals and informed me of my newly founded team...now just by saying that- wouldn't it throw up a flag??? Well it did me- so she left and in comes.....

The PRACTITIONER....very nice lady- made me laugh, saw me cry, took all my info I then asked her what her personal OP was regarding my case (and she's old)(er)...So she told me how she had been in this field for many years...and let's face it- I have seen many practitioners who are ALOT better and more thorough than A LOT of Docs out there- but anyways she said.....
Without knowing the results of the DNA test, I'm ging to say you fit the profile of a CF patient. B/c of everything I had stated in my orig. post., and also b/c of my chloride #'s, the fact I had a hard time conceiving (even though thats mainly a male trait), and she thinks my family is in denial re: the orgins...maybe....maybe not, IDK:/ So she said she is writing all of my stuff (x-rays, blood work, etc.) out with CF diagnosis on it. They are doing DNA against 89 defects right now, she said b/c of insurance, they have to start off small and work their way up- so she said once those are in- she will send me back to have the rest checked. She did say on a positive note that I'm doing something right to be here 34yrs. Ok, so she left the room and the.....

Breathing lady came in......Ohhhhhhhh how fun that was saying H's from the stomach...over and over. LET ME JUST TELL YOU ALL SOMETHING....I feel worse now- than when i went in this morning b/c of what the respitory lady was having me do- my chest feels extremely tight and i'm wheezing and of course I have no inhaler until tomorrow.

So after that the Practitioner came back in and told me how I need to make an appt in 4weeks and they should have the DNA test back.

So with all that said- I'm going to bed but I have to ask...with all the team players here- why do they have you meet with Social Workers???

Have a gn everyone!

Veneicia
 
V

Veneicia

New member
Ok Everyone~ The BIG day came and is now almost gone. Let me tell you, I live 46mi away from the CF clinic, and it's been snowing here (not much) but it's in the single digits- so I had to leave my house by 6:30 to arrive there on time. I get in and the Nurse practitioner had told me the Doc. called in sick.....omg- I was about to pass out! She asked if I wanted to stay- they had so much preliminary work to do and I said- uh ya! I didn't mean for it to come out like that but I'm thinking...was that a trick question. Ok...so this is how it went....

The NURSE stated they could not give me the direct diagnosis b/c the Doc. wasn't there...ok whatever- she took my vitals and informed me of my newly founded team...now just by saying that- wouldn't it throw up a flag??? Well it did me- so she left and in comes.....

The PRACTITIONER....very nice lady- made me laugh, saw me cry, took all my info I then asked her what her personal OP was regarding my case (and she's old)(er)...So she told me how she had been in this field for many years...and let's face it- I have seen many practitioners who are ALOT better and more thorough than A LOT of Docs out there- but anyways she said.....
Without knowing the results of the DNA test, I'm ging to say you fit the profile of a CF patient. B/c of everything I had stated in my orig. post., and also b/c of my chloride #'s, the fact I had a hard time conceiving (even though thats mainly a male trait), and she thinks my family is in denial re: the orgins...maybe....maybe not, IDK:/ So she said she is writing all of my stuff (x-rays, blood work, etc.) out with CF diagnosis on it. They are doing DNA against 89 defects right now, she said b/c of insurance, they have to start off small and work their way up- so she said once those are in- she will send me back to have the rest checked. She did say on a positive note that I'm doing something right to be here 34yrs. Ok, so she left the room and the.....

Breathing lady came in......Ohhhhhhhh how fun that was saying H's from the stomach...over and over. LET ME JUST TELL YOU ALL SOMETHING....I feel worse now- than when i went in this morning b/c of what the respitory lady was having me do- my chest feels extremely tight and i'm wheezing and of course I have no inhaler until tomorrow.

So after that the Practitioner came back in and told me how I need to make an appt in 4weeks and they should have the DNA test back.

So with all that said- I'm going to bed but I have to ask...with all the team players here- why do they have you meet with Social Workers???

Have a gn everyone!

Veneicia
 
V

Veneicia

New member
Ok Everyone~ The BIG day came and is now almost gone. Let me tell you, I live 46mi away from the CF clinic, and it's been snowing here (not much) but it's in the single digits- so I had to leave my house by 6:30 to arrive there on time. I get in and the Nurse practitioner had told me the Doc. called in sick.....omg- I was about to pass out! She asked if I wanted to stay- they had so much preliminary work to do and I said- uh ya! I didn't mean for it to come out like that but I'm thinking...was that a trick question. Ok...so this is how it went....

The NURSE stated they could not give me the direct diagnosis b/c the Doc. wasn't there...ok whatever- she took my vitals and informed me of my newly founded team...now just by saying that- wouldn't it throw up a flag??? Well it did me- so she left and in comes.....

The PRACTITIONER....very nice lady- made me laugh, saw me cry, took all my info I then asked her what her personal OP was regarding my case (and she's old)(er)...So she told me how she had been in this field for many years...and let's face it- I have seen many practitioners who are ALOT better and more thorough than A LOT of Docs out there- but anyways she said.....
Without knowing the results of the DNA test, I'm ging to say you fit the profile of a CF patient. B/c of everything I had stated in my orig. post., and also b/c of my chloride #'s, the fact I had a hard time conceiving (even though thats mainly a male trait), and she thinks my family is in denial re: the orgins...maybe....maybe not, IDK:/ So she said she is writing all of my stuff (x-rays, blood work, etc.) out with CF diagnosis on it. They are doing DNA against 89 defects right now, she said b/c of insurance, they have to start off small and work their way up- so she said once those are in- she will send me back to have the rest checked. She did say on a positive note that I'm doing something right to be here 34yrs. Ok, so she left the room and the.....

Breathing lady came in......Ohhhhhhhh how fun that was saying H's from the stomach...over and over. LET ME JUST TELL YOU ALL SOMETHING....I feel worse now- than when i went in this morning b/c of what the respitory lady was having me do- my chest feels extremely tight and i'm wheezing and of course I have no inhaler until tomorrow.

So after that the Practitioner came back in and told me how I need to make an appt in 4weeks and they should have the DNA test back.

So with all that said- I'm going to bed but I have to ask...with all the team players here- why do they have you meet with Social Workers???

Have a gn everyone!

Veneicia
 
M

Momtana

New member
hi, Veneicia.
I am a late diagnosis - the clue was psuedomonas from the first time anyone ever asked me to cough into a cup! I had at least one missed opportunity for a diagnosis, when I was 20. I am a native New Yorker - upstate, too. I am sorry it is taking so long to get information. If you do have CF then at least you can have a plan and professionals who know how to help you. My diagnosis was good news, I think.
 
M

Momtana

New member
hi, Veneicia.
I am a late diagnosis - the clue was psuedomonas from the first time anyone ever asked me to cough into a cup! I had at least one missed opportunity for a diagnosis, when I was 20. I am a native New Yorker - upstate, too. I am sorry it is taking so long to get information. If you do have CF then at least you can have a plan and professionals who know how to help you. My diagnosis was good news, I think.
 
M

Momtana

New member
hi, Veneicia.
I am a late diagnosis - the clue was psuedomonas from the first time anyone ever asked me to cough into a cup! I had at least one missed opportunity for a diagnosis, when I was 20. I am a native New Yorker - upstate, too. I am sorry it is taking so long to get information. If you do have CF then at least you can have a plan and professionals who know how to help you. My diagnosis was good news, I think.
 
M

Momtana

New member
hi, Veneicia.
I am a late diagnosis - the clue was psuedomonas from the first time anyone ever asked me to cough into a cup! I had at least one missed opportunity for a diagnosis, when I was 20. I am a native New Yorker - upstate, too. I am sorry it is taking so long to get information. If you do have CF then at least you can have a plan and professionals who know how to help you. My diagnosis was good news, I think.
 
M

Momtana

New member
hi, Veneicia.
I am a late diagnosis - the clue was psuedomonas from the first time anyone ever asked me to cough into a cup! I had at least one missed opportunity for a diagnosis, when I was 20. I am a native New Yorker - upstate, too. I am sorry it is taking so long to get information. If you do have CF then at least you can have a plan and professionals who know how to help you. My diagnosis was good news, I think.
 
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