i was diagnosed when i was 3 and i didnt really take any antibiotics ,inhalers , my mum religiously done physio 3 times a day 20 minutes each but i had a lot of problems with my stomach from around 11 and had a gastrostemy put in when i was 13, now at 24 i take hypertonic saline , colomycin and a few other antibiotics i genuinly feel the way to keep ya lung function high is be very aggresive with treatment,physio 3 times a day never miss any inhalers etc but the downside of being so aggresive with treatment is you do feel tired and drained at doing so much treatment its a tough one
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Adults, tell me about your health as a child
- Thread starter rcq925
- Start date
i was diagnosed when i was 3 and i didnt really take any antibiotics ,inhalers , my mum religiously done physio 3 times a day 20 minutes each but i had a lot of problems with my stomach from around 11 and had a gastrostemy put in when i was 13, now at 24 i take hypertonic saline , colomycin and a few other antibiotics i genuinly feel the way to keep ya lung function high is be very aggresive with treatment,physio 3 times a day never miss any inhalers etc but the downside of being so aggresive with treatment is you do feel tired and drained at doing so much treatment its a tough one
Thank you all so much for sharing with me!
I know CF is so unpredictable! It's just nice to see all of you doing so well and I like hearing your positive outlooks on life with CF!!
I am definitely not looking forward to the teenage years, but I am hoping that since at 3, I am instilling in Hayley how important her treatments and meds are and that they are not optional, but mandatory, that it will just continue to be a way of life that we get used to.
It's also hard at her age because I have no idea what her lung function is, she is too big for the infant PFT machine (and our clinic does not have one anyway) and she is not old enough to do the lung function tests yet. So all I really have to base her current health situation on is hospitaizations and all the antibiotics she has been on.
Thanks Amy, for reminding me thought, that I should not be looking at it that way, becausae all the agressive treatment should be preserving her lung function and preventing damage!
I chat on another board of just CF moms with kids of similar age and a lot of their kids have never been hospitalized, never had IV meds, never cultured anything bad and it just makes me sad that Hayley has had to go through so much already! BUt I will continue to focus on the positives!
All of the adults on here are really an inspiration to me and I appreciate you taking the time to answer my post!!
I know CF is so unpredictable! It's just nice to see all of you doing so well and I like hearing your positive outlooks on life with CF!!
I am definitely not looking forward to the teenage years, but I am hoping that since at 3, I am instilling in Hayley how important her treatments and meds are and that they are not optional, but mandatory, that it will just continue to be a way of life that we get used to.
It's also hard at her age because I have no idea what her lung function is, she is too big for the infant PFT machine (and our clinic does not have one anyway) and she is not old enough to do the lung function tests yet. So all I really have to base her current health situation on is hospitaizations and all the antibiotics she has been on.
Thanks Amy, for reminding me thought, that I should not be looking at it that way, becausae all the agressive treatment should be preserving her lung function and preventing damage!
I chat on another board of just CF moms with kids of similar age and a lot of their kids have never been hospitalized, never had IV meds, never cultured anything bad and it just makes me sad that Hayley has had to go through so much already! BUt I will continue to focus on the positives!
All of the adults on here are really an inspiration to me and I appreciate you taking the time to answer my post!!
Thank you all so much for sharing with me!
I know CF is so unpredictable! It's just nice to see all of you doing so well and I like hearing your positive outlooks on life with CF!!
I am definitely not looking forward to the teenage years, but I am hoping that since at 3, I am instilling in Hayley how important her treatments and meds are and that they are not optional, but mandatory, that it will just continue to be a way of life that we get used to.
It's also hard at her age because I have no idea what her lung function is, she is too big for the infant PFT machine (and our clinic does not have one anyway) and she is not old enough to do the lung function tests yet. So all I really have to base her current health situation on is hospitaizations and all the antibiotics she has been on.
Thanks Amy, for reminding me thought, that I should not be looking at it that way, becausae all the agressive treatment should be preserving her lung function and preventing damage!
I chat on another board of just CF moms with kids of similar age and a lot of their kids have never been hospitalized, never had IV meds, never cultured anything bad and it just makes me sad that Hayley has had to go through so much already! BUt I will continue to focus on the positives!
All of the adults on here are really an inspiration to me and I appreciate you taking the time to answer my post!!
I know CF is so unpredictable! It's just nice to see all of you doing so well and I like hearing your positive outlooks on life with CF!!
I am definitely not looking forward to the teenage years, but I am hoping that since at 3, I am instilling in Hayley how important her treatments and meds are and that they are not optional, but mandatory, that it will just continue to be a way of life that we get used to.
It's also hard at her age because I have no idea what her lung function is, she is too big for the infant PFT machine (and our clinic does not have one anyway) and she is not old enough to do the lung function tests yet. So all I really have to base her current health situation on is hospitaizations and all the antibiotics she has been on.
Thanks Amy, for reminding me thought, that I should not be looking at it that way, becausae all the agressive treatment should be preserving her lung function and preventing damage!
I chat on another board of just CF moms with kids of similar age and a lot of their kids have never been hospitalized, never had IV meds, never cultured anything bad and it just makes me sad that Hayley has had to go through so much already! BUt I will continue to focus on the positives!
All of the adults on here are really an inspiration to me and I appreciate you taking the time to answer my post!!
Thank you all so much for sharing with me!
I know CF is so unpredictable! It's just nice to see all of you doing so well and I like hearing your positive outlooks on life with CF!!
I am definitely not looking forward to the teenage years, but I am hoping that since at 3, I am instilling in Hayley how important her treatments and meds are and that they are not optional, but mandatory, that it will just continue to be a way of life that we get used to.
It's also hard at her age because I have no idea what her lung function is, she is too big for the infant PFT machine (and our clinic does not have one anyway) and she is not old enough to do the lung function tests yet. So all I really have to base her current health situation on is hospitaizations and all the antibiotics she has been on.
Thanks Amy, for reminding me thought, that I should not be looking at it that way, becausae all the agressive treatment should be preserving her lung function and preventing damage!
I chat on another board of just CF moms with kids of similar age and a lot of their kids have never been hospitalized, never had IV meds, never cultured anything bad and it just makes me sad that Hayley has had to go through so much already! BUt I will continue to focus on the positives!
All of the adults on here are really an inspiration to me and I appreciate you taking the time to answer my post!!
I know CF is so unpredictable! It's just nice to see all of you doing so well and I like hearing your positive outlooks on life with CF!!
I am definitely not looking forward to the teenage years, but I am hoping that since at 3, I am instilling in Hayley how important her treatments and meds are and that they are not optional, but mandatory, that it will just continue to be a way of life that we get used to.
It's also hard at her age because I have no idea what her lung function is, she is too big for the infant PFT machine (and our clinic does not have one anyway) and she is not old enough to do the lung function tests yet. So all I really have to base her current health situation on is hospitaizations and all the antibiotics she has been on.
Thanks Amy, for reminding me thought, that I should not be looking at it that way, becausae all the agressive treatment should be preserving her lung function and preventing damage!
I chat on another board of just CF moms with kids of similar age and a lot of their kids have never been hospitalized, never had IV meds, never cultured anything bad and it just makes me sad that Hayley has had to go through so much already! BUt I will continue to focus on the positives!
All of the adults on here are really an inspiration to me and I appreciate you taking the time to answer my post!!
Thank you all so much for sharing with me!
I know CF is so unpredictable! It's just nice to see all of you doing so well and I like hearing your positive outlooks on life with CF!!
I am definitely not looking forward to the teenage years, but I am hoping that since at 3, I am instilling in Hayley how important her treatments and meds are and that they are not optional, but mandatory, that it will just continue to be a way of life that we get used to.
It's also hard at her age because I have no idea what her lung function is, she is too big for the infant PFT machine (and our clinic does not have one anyway) and she is not old enough to do the lung function tests yet. So all I really have to base her current health situation on is hospitaizations and all the antibiotics she has been on.
Thanks Amy, for reminding me thought, that I should not be looking at it that way, becausae all the agressive treatment should be preserving her lung function and preventing damage!
I chat on another board of just CF moms with kids of similar age and a lot of their kids have never been hospitalized, never had IV meds, never cultured anything bad and it just makes me sad that Hayley has had to go through so much already! BUt I will continue to focus on the positives!
All of the adults on here are really an inspiration to me and I appreciate you taking the time to answer my post!!
I know CF is so unpredictable! It's just nice to see all of you doing so well and I like hearing your positive outlooks on life with CF!!
I am definitely not looking forward to the teenage years, but I am hoping that since at 3, I am instilling in Hayley how important her treatments and meds are and that they are not optional, but mandatory, that it will just continue to be a way of life that we get used to.
It's also hard at her age because I have no idea what her lung function is, she is too big for the infant PFT machine (and our clinic does not have one anyway) and she is not old enough to do the lung function tests yet. So all I really have to base her current health situation on is hospitaizations and all the antibiotics she has been on.
Thanks Amy, for reminding me thought, that I should not be looking at it that way, becausae all the agressive treatment should be preserving her lung function and preventing damage!
I chat on another board of just CF moms with kids of similar age and a lot of their kids have never been hospitalized, never had IV meds, never cultured anything bad and it just makes me sad that Hayley has had to go through so much already! BUt I will continue to focus on the positives!
All of the adults on here are really an inspiration to me and I appreciate you taking the time to answer my post!!
Thank you all so much for sharing with me!
I know CF is so unpredictable! It's just nice to see all of you doing so well and I like hearing your positive outlooks on life with CF!!
I am definitely not looking forward to the teenage years, but I am hoping that since at 3, I am instilling in Hayley how important her treatments and meds are and that they are not optional, but mandatory, that it will just continue to be a way of life that we get used to.
It's also hard at her age because I have no idea what her lung function is, she is too big for the infant PFT machine (and our clinic does not have one anyway) and she is not old enough to do the lung function tests yet. So all I really have to base her current health situation on is hospitaizations and all the antibiotics she has been on.
Thanks Amy, for reminding me thought, that I should not be looking at it that way, becausae all the agressive treatment should be preserving her lung function and preventing damage!
I chat on another board of just CF moms with kids of similar age and a lot of their kids have never been hospitalized, never had IV meds, never cultured anything bad and it just makes me sad that Hayley has had to go through so much already! BUt I will continue to focus on the positives!
All of the adults on here are really an inspiration to me and I appreciate you taking the time to answer my post!!
I know CF is so unpredictable! It's just nice to see all of you doing so well and I like hearing your positive outlooks on life with CF!!
I am definitely not looking forward to the teenage years, but I am hoping that since at 3, I am instilling in Hayley how important her treatments and meds are and that they are not optional, but mandatory, that it will just continue to be a way of life that we get used to.
It's also hard at her age because I have no idea what her lung function is, she is too big for the infant PFT machine (and our clinic does not have one anyway) and she is not old enough to do the lung function tests yet. So all I really have to base her current health situation on is hospitaizations and all the antibiotics she has been on.
Thanks Amy, for reminding me thought, that I should not be looking at it that way, becausae all the agressive treatment should be preserving her lung function and preventing damage!
I chat on another board of just CF moms with kids of similar age and a lot of their kids have never been hospitalized, never had IV meds, never cultured anything bad and it just makes me sad that Hayley has had to go through so much already! BUt I will continue to focus on the positives!
All of the adults on here are really an inspiration to me and I appreciate you taking the time to answer my post!!
Thank you all so much for sharing with me!
I know CF is so unpredictable! It's just nice to see all of you doing so well and I like hearing your positive outlooks on life with CF!!
I am definitely not looking forward to the teenage years, but I am hoping that since at 3, I am instilling in Hayley how important her treatments and meds are and that they are not optional, but mandatory, that it will just continue to be a way of life that we get used to.
It's also hard at her age because I have no idea what her lung function is, she is too big for the infant PFT machine (and our clinic does not have one anyway) and she is not old enough to do the lung function tests yet. So all I really have to base her current health situation on is hospitaizations and all the antibiotics she has been on.
Thanks Amy, for reminding me thought, that I should not be looking at it that way, becausae all the agressive treatment should be preserving her lung function and preventing damage!
I chat on another board of just CF moms with kids of similar age and a lot of their kids have never been hospitalized, never had IV meds, never cultured anything bad and it just makes me sad that Hayley has had to go through so much already! BUt I will continue to focus on the positives!
All of the adults on here are really an inspiration to me and I appreciate you taking the time to answer my post!!
I know CF is so unpredictable! It's just nice to see all of you doing so well and I like hearing your positive outlooks on life with CF!!
I am definitely not looking forward to the teenage years, but I am hoping that since at 3, I am instilling in Hayley how important her treatments and meds are and that they are not optional, but mandatory, that it will just continue to be a way of life that we get used to.
It's also hard at her age because I have no idea what her lung function is, she is too big for the infant PFT machine (and our clinic does not have one anyway) and she is not old enough to do the lung function tests yet. So all I really have to base her current health situation on is hospitaizations and all the antibiotics she has been on.
Thanks Amy, for reminding me thought, that I should not be looking at it that way, becausae all the agressive treatment should be preserving her lung function and preventing damage!
I chat on another board of just CF moms with kids of similar age and a lot of their kids have never been hospitalized, never had IV meds, never cultured anything bad and it just makes me sad that Hayley has had to go through so much already! BUt I will continue to focus on the positives!
All of the adults on here are really an inspiration to me and I appreciate you taking the time to answer my post!!
As a child I was diagnosed with cronic broncitus and asthma. My mom actually took me to the doctor and told him I tasted salty; to which he replied, "If she had cystic fibrosis sahe'd be dying".
I had a lot of "colds" and "flus", and when I was 16 after some horrible pain in my upper right abdomen I was even told that I was high strung. My parents switched dr's (again) and the dr took one look at me; asked me some questions...and said "Its your galbladder" She sent me for tests and she was 100% right. They removed it as it was full of stones; but a week later I still had pain. In the same spot too. They did more tests and put me in the hospital with a "pancreas attack" and diagnosed me with idiopathic pancreatitus.
Meanwhile the surgeon who removed my galbladder noticed durring the surgery that I had muscle spasms and kept twitching. So after being sent to a nurologist and not being able to find anything (he did a lot of tests) I was sent to NIH in Bethesda MD. I was then diagnosed with a mitochondrial mutation (they did a muscle biopsy, umong other tests although they were unable to detect the exact mutation)
For years I saw a muscle dr, and finally 2 months before I was to be married (at 21 years old, 1999) I begged them to help me with my cough...they did more tests...It was then that I was diagnosed with CF (DF508 and R347P) (They called me to tell me my genes on my honeymoon...that's how we knew for sure)
In 2002 they called me (this time a genetics dr and researcher) I went in and they had developed
a stain to dectect *any* mutation in the mitochondria...and they found not 1 but 2. One rare and one never seen before. (<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12400067&dopt=Citation">NIH article</a>)
I think it's great that you are researching and trying to stay on top of her health...
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 years old with CF
I had a lot of "colds" and "flus", and when I was 16 after some horrible pain in my upper right abdomen I was even told that I was high strung. My parents switched dr's (again) and the dr took one look at me; asked me some questions...and said "Its your galbladder" She sent me for tests and she was 100% right. They removed it as it was full of stones; but a week later I still had pain. In the same spot too. They did more tests and put me in the hospital with a "pancreas attack" and diagnosed me with idiopathic pancreatitus.
Meanwhile the surgeon who removed my galbladder noticed durring the surgery that I had muscle spasms and kept twitching. So after being sent to a nurologist and not being able to find anything (he did a lot of tests) I was sent to NIH in Bethesda MD. I was then diagnosed with a mitochondrial mutation (they did a muscle biopsy, umong other tests although they were unable to detect the exact mutation)
For years I saw a muscle dr, and finally 2 months before I was to be married (at 21 years old, 1999) I begged them to help me with my cough...they did more tests...It was then that I was diagnosed with CF (DF508 and R347P) (They called me to tell me my genes on my honeymoon...that's how we knew for sure)
In 2002 they called me (this time a genetics dr and researcher) I went in and they had developed
a stain to dectect *any* mutation in the mitochondria...and they found not 1 but 2. One rare and one never seen before. (<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12400067&dopt=Citation">NIH article</a>)
I think it's great that you are researching and trying to stay on top of her health...
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 years old with CF
As a child I was diagnosed with cronic broncitus and asthma. My mom actually took me to the doctor and told him I tasted salty; to which he replied, "If she had cystic fibrosis sahe'd be dying".
I had a lot of "colds" and "flus", and when I was 16 after some horrible pain in my upper right abdomen I was even told that I was high strung. My parents switched dr's (again) and the dr took one look at me; asked me some questions...and said "Its your galbladder" She sent me for tests and she was 100% right. They removed it as it was full of stones; but a week later I still had pain. In the same spot too. They did more tests and put me in the hospital with a "pancreas attack" and diagnosed me with idiopathic pancreatitus.
Meanwhile the surgeon who removed my galbladder noticed durring the surgery that I had muscle spasms and kept twitching. So after being sent to a nurologist and not being able to find anything (he did a lot of tests) I was sent to NIH in Bethesda MD. I was then diagnosed with a mitochondrial mutation (they did a muscle biopsy, umong other tests although they were unable to detect the exact mutation)
For years I saw a muscle dr, and finally 2 months before I was to be married (at 21 years old, 1999) I begged them to help me with my cough...they did more tests...It was then that I was diagnosed with CF (DF508 and R347P) (They called me to tell me my genes on my honeymoon...that's how we knew for sure)
In 2002 they called me (this time a genetics dr and researcher) I went in and they had developed
a stain to dectect *any* mutation in the mitochondria...and they found not 1 but 2. One rare and one never seen before. (<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12400067&dopt=Citation">NIH article</a>)
I think it's great that you are researching and trying to stay on top of her health...
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 years old with CF
I had a lot of "colds" and "flus", and when I was 16 after some horrible pain in my upper right abdomen I was even told that I was high strung. My parents switched dr's (again) and the dr took one look at me; asked me some questions...and said "Its your galbladder" She sent me for tests and she was 100% right. They removed it as it was full of stones; but a week later I still had pain. In the same spot too. They did more tests and put me in the hospital with a "pancreas attack" and diagnosed me with idiopathic pancreatitus.
Meanwhile the surgeon who removed my galbladder noticed durring the surgery that I had muscle spasms and kept twitching. So after being sent to a nurologist and not being able to find anything (he did a lot of tests) I was sent to NIH in Bethesda MD. I was then diagnosed with a mitochondrial mutation (they did a muscle biopsy, umong other tests although they were unable to detect the exact mutation)
For years I saw a muscle dr, and finally 2 months before I was to be married (at 21 years old, 1999) I begged them to help me with my cough...they did more tests...It was then that I was diagnosed with CF (DF508 and R347P) (They called me to tell me my genes on my honeymoon...that's how we knew for sure)
In 2002 they called me (this time a genetics dr and researcher) I went in and they had developed
a stain to dectect *any* mutation in the mitochondria...and they found not 1 but 2. One rare and one never seen before. (<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12400067&dopt=Citation">NIH article</a>)
I think it's great that you are researching and trying to stay on top of her health...
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 years old with CF
As a child I was diagnosed with cronic broncitus and asthma. My mom actually took me to the doctor and told him I tasted salty; to which he replied, "If she had cystic fibrosis sahe'd be dying".
I had a lot of "colds" and "flus", and when I was 16 after some horrible pain in my upper right abdomen I was even told that I was high strung. My parents switched dr's (again) and the dr took one look at me; asked me some questions...and said "Its your galbladder" She sent me for tests and she was 100% right. They removed it as it was full of stones; but a week later I still had pain. In the same spot too. They did more tests and put me in the hospital with a "pancreas attack" and diagnosed me with idiopathic pancreatitus.
Meanwhile the surgeon who removed my galbladder noticed durring the surgery that I had muscle spasms and kept twitching. So after being sent to a nurologist and not being able to find anything (he did a lot of tests) I was sent to NIH in Bethesda MD. I was then diagnosed with a mitochondrial mutation (they did a muscle biopsy, umong other tests although they were unable to detect the exact mutation)
For years I saw a muscle dr, and finally 2 months before I was to be married (at 21 years old, 1999) I begged them to help me with my cough...they did more tests...It was then that I was diagnosed with CF (DF508 and R347P) (They called me to tell me my genes on my honeymoon...that's how we knew for sure)
In 2002 they called me (this time a genetics dr and researcher) I went in and they had developed
a stain to dectect *any* mutation in the mitochondria...and they found not 1 but 2. One rare and one never seen before. (<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12400067&dopt=Citation">NIH article</a>)
I think it's great that you are researching and trying to stay on top of her health...
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 years old with CF
I had a lot of "colds" and "flus", and when I was 16 after some horrible pain in my upper right abdomen I was even told that I was high strung. My parents switched dr's (again) and the dr took one look at me; asked me some questions...and said "Its your galbladder" She sent me for tests and she was 100% right. They removed it as it was full of stones; but a week later I still had pain. In the same spot too. They did more tests and put me in the hospital with a "pancreas attack" and diagnosed me with idiopathic pancreatitus.
Meanwhile the surgeon who removed my galbladder noticed durring the surgery that I had muscle spasms and kept twitching. So after being sent to a nurologist and not being able to find anything (he did a lot of tests) I was sent to NIH in Bethesda MD. I was then diagnosed with a mitochondrial mutation (they did a muscle biopsy, umong other tests although they were unable to detect the exact mutation)
For years I saw a muscle dr, and finally 2 months before I was to be married (at 21 years old, 1999) I begged them to help me with my cough...they did more tests...It was then that I was diagnosed with CF (DF508 and R347P) (They called me to tell me my genes on my honeymoon...that's how we knew for sure)
In 2002 they called me (this time a genetics dr and researcher) I went in and they had developed
a stain to dectect *any* mutation in the mitochondria...and they found not 1 but 2. One rare and one never seen before. (<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12400067&dopt=Citation">NIH article</a>)
I think it's great that you are researching and trying to stay on top of her health...
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 years old with CF
As a child I was diagnosed with cronic broncitus and asthma. My mom actually took me to the doctor and told him I tasted salty; to which he replied, "If she had cystic fibrosis sahe'd be dying".
I had a lot of "colds" and "flus", and when I was 16 after some horrible pain in my upper right abdomen I was even told that I was high strung. My parents switched dr's (again) and the dr took one look at me; asked me some questions...and said "Its your galbladder" She sent me for tests and she was 100% right. They removed it as it was full of stones; but a week later I still had pain. In the same spot too. They did more tests and put me in the hospital with a "pancreas attack" and diagnosed me with idiopathic pancreatitus.
Meanwhile the surgeon who removed my galbladder noticed durring the surgery that I had muscle spasms and kept twitching. So after being sent to a nurologist and not being able to find anything (he did a lot of tests) I was sent to NIH in Bethesda MD. I was then diagnosed with a mitochondrial mutation (they did a muscle biopsy, umong other tests although they were unable to detect the exact mutation)
For years I saw a muscle dr, and finally 2 months before I was to be married (at 21 years old, 1999) I begged them to help me with my cough...they did more tests...It was then that I was diagnosed with CF (DF508 and R347P) (They called me to tell me my genes on my honeymoon...that's how we knew for sure)
In 2002 they called me (this time a genetics dr and researcher) I went in and they had developed
a stain to dectect *any* mutation in the mitochondria...and they found not 1 but 2. One rare and one never seen before. (<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12400067&dopt=Citation">NIH article</a>)
I think it's great that you are researching and trying to stay on top of her health...
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 years old with CF
I had a lot of "colds" and "flus", and when I was 16 after some horrible pain in my upper right abdomen I was even told that I was high strung. My parents switched dr's (again) and the dr took one look at me; asked me some questions...and said "Its your galbladder" She sent me for tests and she was 100% right. They removed it as it was full of stones; but a week later I still had pain. In the same spot too. They did more tests and put me in the hospital with a "pancreas attack" and diagnosed me with idiopathic pancreatitus.
Meanwhile the surgeon who removed my galbladder noticed durring the surgery that I had muscle spasms and kept twitching. So after being sent to a nurologist and not being able to find anything (he did a lot of tests) I was sent to NIH in Bethesda MD. I was then diagnosed with a mitochondrial mutation (they did a muscle biopsy, umong other tests although they were unable to detect the exact mutation)
For years I saw a muscle dr, and finally 2 months before I was to be married (at 21 years old, 1999) I begged them to help me with my cough...they did more tests...It was then that I was diagnosed with CF (DF508 and R347P) (They called me to tell me my genes on my honeymoon...that's how we knew for sure)
In 2002 they called me (this time a genetics dr and researcher) I went in and they had developed
a stain to dectect *any* mutation in the mitochondria...and they found not 1 but 2. One rare and one never seen before. (<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12400067&dopt=Citation">NIH article</a>)
I think it's great that you are researching and trying to stay on top of her health...
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 years old with CF
As a child I was diagnosed with cronic broncitus and asthma. My mom actually took me to the doctor and told him I tasted salty; to which he replied, "If she had cystic fibrosis sahe'd be dying".
I had a lot of "colds" and "flus", and when I was 16 after some horrible pain in my upper right abdomen I was even told that I was high strung. My parents switched dr's (again) and the dr took one look at me; asked me some questions...and said "Its your galbladder" She sent me for tests and she was 100% right. They removed it as it was full of stones; but a week later I still had pain. In the same spot too. They did more tests and put me in the hospital with a "pancreas attack" and diagnosed me with idiopathic pancreatitus.
Meanwhile the surgeon who removed my galbladder noticed durring the surgery that I had muscle spasms and kept twitching. So after being sent to a nurologist and not being able to find anything (he did a lot of tests) I was sent to NIH in Bethesda MD. I was then diagnosed with a mitochondrial mutation (they did a muscle biopsy, umong other tests although they were unable to detect the exact mutation)
For years I saw a muscle dr, and finally 2 months before I was to be married (at 21 years old, 1999) I begged them to help me with my cough...they did more tests...It was then that I was diagnosed with CF (DF508 and R347P) (They called me to tell me my genes on my honeymoon...that's how we knew for sure)
In 2002 they called me (this time a genetics dr and researcher) I went in and they had developed
a stain to dectect *any* mutation in the mitochondria...and they found not 1 but 2. One rare and one never seen before. (<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12400067&dopt=Citation">NIH article</a>)
I think it's great that you are researching and trying to stay on top of her health...
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 years old with CF
I had a lot of "colds" and "flus", and when I was 16 after some horrible pain in my upper right abdomen I was even told that I was high strung. My parents switched dr's (again) and the dr took one look at me; asked me some questions...and said "Its your galbladder" She sent me for tests and she was 100% right. They removed it as it was full of stones; but a week later I still had pain. In the same spot too. They did more tests and put me in the hospital with a "pancreas attack" and diagnosed me with idiopathic pancreatitus.
Meanwhile the surgeon who removed my galbladder noticed durring the surgery that I had muscle spasms and kept twitching. So after being sent to a nurologist and not being able to find anything (he did a lot of tests) I was sent to NIH in Bethesda MD. I was then diagnosed with a mitochondrial mutation (they did a muscle biopsy, umong other tests although they were unable to detect the exact mutation)
For years I saw a muscle dr, and finally 2 months before I was to be married (at 21 years old, 1999) I begged them to help me with my cough...they did more tests...It was then that I was diagnosed with CF (DF508 and R347P) (They called me to tell me my genes on my honeymoon...that's how we knew for sure)
In 2002 they called me (this time a genetics dr and researcher) I went in and they had developed
a stain to dectect *any* mutation in the mitochondria...and they found not 1 but 2. One rare and one never seen before. (<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12400067&dopt=Citation">NIH article</a>)
I think it's great that you are researching and trying to stay on top of her health...
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 years old with CF
As a child I was diagnosed with cronic broncitus and asthma. My mom actually took me to the doctor and told him I tasted salty; to which he replied, "If she had cystic fibrosis sahe'd be dying".
I had a lot of "colds" and "flus", and when I was 16 after some horrible pain in my upper right abdomen I was even told that I was high strung. My parents switched dr's (again) and the dr took one look at me; asked me some questions...and said "Its your galbladder" She sent me for tests and she was 100% right. They removed it as it was full of stones; but a week later I still had pain. In the same spot too. They did more tests and put me in the hospital with a "pancreas attack" and diagnosed me with idiopathic pancreatitus.
Meanwhile the surgeon who removed my galbladder noticed durring the surgery that I had muscle spasms and kept twitching. So after being sent to a nurologist and not being able to find anything (he did a lot of tests) I was sent to NIH in Bethesda MD. I was then diagnosed with a mitochondrial mutation (they did a muscle biopsy, umong other tests although they were unable to detect the exact mutation)
For years I saw a muscle dr, and finally 2 months before I was to be married (at 21 years old, 1999) I begged them to help me with my cough...they did more tests...It was then that I was diagnosed with CF (DF508 and R347P) (They called me to tell me my genes on my honeymoon...that's how we knew for sure)
In 2002 they called me (this time a genetics dr and researcher) I went in and they had developed
a stain to dectect *any* mutation in the mitochondria...and they found not 1 but 2. One rare and one never seen before. (<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12400067&dopt=Citation">NIH article</a>)
I think it's great that you are researching and trying to stay on top of her health...
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 years old with CF
I had a lot of "colds" and "flus", and when I was 16 after some horrible pain in my upper right abdomen I was even told that I was high strung. My parents switched dr's (again) and the dr took one look at me; asked me some questions...and said "Its your galbladder" She sent me for tests and she was 100% right. They removed it as it was full of stones; but a week later I still had pain. In the same spot too. They did more tests and put me in the hospital with a "pancreas attack" and diagnosed me with idiopathic pancreatitus.
Meanwhile the surgeon who removed my galbladder noticed durring the surgery that I had muscle spasms and kept twitching. So after being sent to a nurologist and not being able to find anything (he did a lot of tests) I was sent to NIH in Bethesda MD. I was then diagnosed with a mitochondrial mutation (they did a muscle biopsy, umong other tests although they were unable to detect the exact mutation)
For years I saw a muscle dr, and finally 2 months before I was to be married (at 21 years old, 1999) I begged them to help me with my cough...they did more tests...It was then that I was diagnosed with CF (DF508 and R347P) (They called me to tell me my genes on my honeymoon...that's how we knew for sure)
In 2002 they called me (this time a genetics dr and researcher) I went in and they had developed
a stain to dectect *any* mutation in the mitochondria...and they found not 1 but 2. One rare and one never seen before. (<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12400067&dopt=Citation">NIH article</a>)
I think it's great that you are researching and trying to stay on top of her health...
<img src="i/expressions/rose.gif" border="0">
Chrissy
30 years old with CF
Thanks Becky !
I have a 3.5 yo girl w/cf. I have been wanting to ask that question for a while... I I know her progression will not model someone elses, but the fear of the unknown makes me want to ask every question I can think of. It is always interesting to hear where others have come from!<img src="i/expressions/heart.gif" border="0">
I have a 3.5 yo girl w/cf. I have been wanting to ask that question for a while... I I know her progression will not model someone elses, but the fear of the unknown makes me want to ask every question I can think of. It is always interesting to hear where others have come from!<img src="i/expressions/heart.gif" border="0">
Thanks Becky !
I have a 3.5 yo girl w/cf. I have been wanting to ask that question for a while... I I know her progression will not model someone elses, but the fear of the unknown makes me want to ask every question I can think of. It is always interesting to hear where others have come from!<img src="i/expressions/heart.gif" border="0">
I have a 3.5 yo girl w/cf. I have been wanting to ask that question for a while... I I know her progression will not model someone elses, but the fear of the unknown makes me want to ask every question I can think of. It is always interesting to hear where others have come from!<img src="i/expressions/heart.gif" border="0">
Thanks Becky !
I have a 3.5 yo girl w/cf. I have been wanting to ask that question for a while... I I know her progression will not model someone elses, but the fear of the unknown makes me want to ask every question I can think of. It is always interesting to hear where others have come from!<img src="i/expressions/heart.gif" border="0">
I have a 3.5 yo girl w/cf. I have been wanting to ask that question for a while... I I know her progression will not model someone elses, but the fear of the unknown makes me want to ask every question I can think of. It is always interesting to hear where others have come from!<img src="i/expressions/heart.gif" border="0">
Thanks Becky !
I have a 3.5 yo girl w/cf. I have been wanting to ask that question for a while... I I know her progression will not model someone elses, but the fear of the unknown makes me want to ask every question I can think of. It is always interesting to hear where others have come from!<img src="i/expressions/heart.gif" border="0">
I have a 3.5 yo girl w/cf. I have been wanting to ask that question for a while... I I know her progression will not model someone elses, but the fear of the unknown makes me want to ask every question I can think of. It is always interesting to hear where others have come from!<img src="i/expressions/heart.gif" border="0">
Thanks Becky !
I have a 3.5 yo girl w/cf. I have been wanting to ask that question for a while... I I know her progression will not model someone elses, but the fear of the unknown makes me want to ask every question I can think of. It is always interesting to hear where others have come from!<img src="i/expressions/heart.gif" border="0">
I have a 3.5 yo girl w/cf. I have been wanting to ask that question for a while... I I know her progression will not model someone elses, but the fear of the unknown makes me want to ask every question I can think of. It is always interesting to hear where others have come from!<img src="i/expressions/heart.gif" border="0">
Thanks Becky !
I have a 3.5 yo girl w/cf. I have been wanting to ask that question for a while... I I know her progression will not model someone elses, but the fear of the unknown makes me want to ask every question I can think of. It is always interesting to hear where others have come from!<img src="i/expressions/heart.gif" border="0">
I have a 3.5 yo girl w/cf. I have been wanting to ask that question for a while... I I know her progression will not model someone elses, but the fear of the unknown makes me want to ask every question I can think of. It is always interesting to hear where others have come from!<img src="i/expressions/heart.gif" border="0">