I was always sick with bronchitis and pneumonia and GI problems my whole life. When I was 33 I moved to Tennessee from Florida and I ended up with pneumonia so bad and it would not go away this time. My FEV1 was 55% and I cultured PA. The first Pulmonoligist I saw did a DNA test and found that I have CF. It has taken over a year to get rid of the fevers, nine hositals visits later I am finally starting to improve. No fevers in a month, but my FEV1 is now down to 29%. I cannot work at the moment, but am hoping to go back in a few months. Sorry this was so long winded.
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diagnosis story
- Thread starter wanderlost
- Start date
I was born a healthy baby. Mom soon noticed my very messy diapers and fed me around the clock every 2 hours because I was hungry and she felt baby knew best. Then pneumonia at 8 months and then again at 16 months. Finally, a cf diagnosis at age 2.5 years old. That was after 3 sweat tests that revealed I had cf but 'couldn't be true' because I was thriving too well. The first one being when I was 6 months old!
I was born a healthy baby. Mom soon noticed my very messy diapers and fed me around the clock every 2 hours because I was hungry and she felt baby knew best. Then pneumonia at 8 months and then again at 16 months. Finally, a cf diagnosis at age 2.5 years old. That was after 3 sweat tests that revealed I had cf but 'couldn't be true' because I was thriving too well. The first one being when I was 6 months old!
I was born a healthy baby. Mom soon noticed my very messy diapers and fed me around the clock every 2 hours because I was hungry and she felt baby knew best. Then pneumonia at 8 months and then again at 16 months. Finally, a cf diagnosis at age 2.5 years old. That was after 3 sweat tests that revealed I had cf but 'couldn't be true' because I was thriving too well. The first one being when I was 6 months old!
Emily65Roses
New member
Mine is very routine. Meconium ileus at birth. 2 days old, blockage surgically removed. From there on out, I went on enzymes and stuff. It was assumed I had CF. Then when I was 6 months old (I believe back then, that was the youngest they could do a sweat test), my sweat test results came back as 106. Hah!
Emily65Roses
New member
Mine is very routine. Meconium ileus at birth. 2 days old, blockage surgically removed. From there on out, I went on enzymes and stuff. It was assumed I had CF. Then when I was 6 months old (I believe back then, that was the youngest they could do a sweat test), my sweat test results came back as 106. Hah!
Emily65Roses
New member
Mine is very routine. Meconium ileus at birth. 2 days old, blockage surgically removed. From there on out, I went on enzymes and stuff. It was assumed I had CF. Then when I was 6 months old (I believe back then, that was the youngest they could do a sweat test), my sweat test results came back as 106. Hah!
i was a skinny little kid growing up as was my sister, she was six years older than me, my mom was always trying to fatten me up,(i don't have that problem anymore,on a diet now)... i had some problems with my lungs but more with my belly, my sister had more problems with her lungs... she started coughing up blood about the age of 16 and had two lung surgeries in her 20's/30's. i had 4 gut surgeries, they never put 2 and 2 together about us... when i was 44 (she was 50) i started to cough up blood and my cough started to sound just like hers, i knew right then that whatever it was we had the same thing. ( i was a heavy smoker for 18 years, but had quit about 10 years prior to getting dx because i couldn't breath anymore) about that time my family dr.retired, the new dr.said i should see a pulmo dr.,she did process of elimination, sent me for a sweat test, said she didn't think it was this but wanted to check (thank God for drs like that) called me back, said it was positive and that i should go to a c/f center. after i told the drs. at the center about my sister, they said they were positive she had c/f,have her come in to be tested, she did, she was. my sister linda died that year of breast cancer, went almost her whole life not knowing what it was that she had... its been 11 years now since i got dx.
i was a skinny little kid growing up as was my sister, she was six years older than me, my mom was always trying to fatten me up,(i don't have that problem anymore,on a diet now)... i had some problems with my lungs but more with my belly, my sister had more problems with her lungs... she started coughing up blood about the age of 16 and had two lung surgeries in her 20's/30's. i had 4 gut surgeries, they never put 2 and 2 together about us... when i was 44 (she was 50) i started to cough up blood and my cough started to sound just like hers, i knew right then that whatever it was we had the same thing. ( i was a heavy smoker for 18 years, but had quit about 10 years prior to getting dx because i couldn't breath anymore) about that time my family dr.retired, the new dr.said i should see a pulmo dr.,she did process of elimination, sent me for a sweat test, said she didn't think it was this but wanted to check (thank God for drs like that) called me back, said it was positive and that i should go to a c/f center. after i told the drs. at the center about my sister, they said they were positive she had c/f,have her come in to be tested, she did, she was. my sister linda died that year of breast cancer, went almost her whole life not knowing what it was that she had... its been 11 years now since i got dx.
i was a skinny little kid growing up as was my sister, she was six years older than me, my mom was always trying to fatten me up,(i don't have that problem anymore,on a diet now)... i had some problems with my lungs but more with my belly, my sister had more problems with her lungs... she started coughing up blood about the age of 16 and had two lung surgeries in her 20's/30's. i had 4 gut surgeries, they never put 2 and 2 together about us... when i was 44 (she was 50) i started to cough up blood and my cough started to sound just like hers, i knew right then that whatever it was we had the same thing. ( i was a heavy smoker for 18 years, but had quit about 10 years prior to getting dx because i couldn't breath anymore) about that time my family dr.retired, the new dr.said i should see a pulmo dr.,she did process of elimination, sent me for a sweat test, said she didn't think it was this but wanted to check (thank God for drs like that) called me back, said it was positive and that i should go to a c/f center. after i told the drs. at the center about my sister, they said they were positive she had c/f,have her come in to be tested, she did, she was. my sister linda died that year of breast cancer, went almost her whole life not knowing what it was that she had... its been 11 years now since i got dx.
I was born on time at a weight of 6 lbs 12 oz. I was healthy & chubby (never sickly thin) for the first 7 years of my life. BUT I would poop and cry. Poop and fart. My Mother said potty training was horrific in many ways including my ability to clear the house when I chose to show everyone my potty chair (at that time you had a mini chair with the plastic poop bowl in it) and how I could poop in it. After I started school it became increasingly worse with problems at school so I began allergy testing. Allergy testing up the ass, but to no avail stumped the allergist and referred me for the sweat test. Not having any lung issues at that time he doubted that was it, but figured rule it out if nothing else. Away to Bostons Childrens Hospital because my sis lived in Boston at the time. The numbers were sky high & the rest is history.
I was born on time at a weight of 6 lbs 12 oz. I was healthy & chubby (never sickly thin) for the first 7 years of my life. BUT I would poop and cry. Poop and fart. My Mother said potty training was horrific in many ways including my ability to clear the house when I chose to show everyone my potty chair (at that time you had a mini chair with the plastic poop bowl in it) and how I could poop in it. After I started school it became increasingly worse with problems at school so I began allergy testing. Allergy testing up the ass, but to no avail stumped the allergist and referred me for the sweat test. Not having any lung issues at that time he doubted that was it, but figured rule it out if nothing else. Away to Bostons Childrens Hospital because my sis lived in Boston at the time. The numbers were sky high & the rest is history.
I was born on time at a weight of 6 lbs 12 oz. I was healthy & chubby (never sickly thin) for the first 7 years of my life. BUT I would poop and cry. Poop and fart. My Mother said potty training was horrific in many ways including my ability to clear the house when I chose to show everyone my potty chair (at that time you had a mini chair with the plastic poop bowl in it) and how I could poop in it. After I started school it became increasingly worse with problems at school so I began allergy testing. Allergy testing up the ass, but to no avail stumped the allergist and referred me for the sweat test. Not having any lung issues at that time he doubted that was it, but figured rule it out if nothing else. Away to Bostons Childrens Hospital because my sis lived in Boston at the time. The numbers were sky high & the rest is history.
Lets see what let us to the final conclusion on Nov 25 2002 that determined my son had Cf. From early on Eric had been a sickly child. He had pnemonia for the first time at age 9mths. He also was not gaining weight. I also was constantly asking why when I kissed my child it seemed as though I was kissing a salt shaker. They said some kids are just that way. My first child I didn't know better. After constant pneumonia and bronchitis and other problems (and my nagging to find out why) they finally tested him at the age of four (97). The test came back negative. He finally got in a spell of where he wasn't sick. Mind you he still wasn't growing very good. I changed doctors in 99 (my fourth one). He started getting sick again. In sept 02 he got bronchitis it wouldn't go away. In Oct 02 we were told he now had pneumonia. We were sent for testing at a cf hospital in Augusta Ga. On Nov 02 our lives changed (mind you i am pregnant with our third child due in april 03). We found out Eric had cf. I was scared, relieved, worried, and overwhelmed all at the same time. Finally we had a diagnosis to what was wrong. Relieved to be able to do something for him. But scared as to what was ahead for us. A baby on the way and a son who all I could think about at the time that was going to be taken away from us before he could live his life. All I could think about was I couldn't lose him. Now we have learned to cope. We look forward to everyday we have. We fight for everyday we are given. We live life like there is no tommrow. Our new motto is to live, laugh and pray for a new day. A day that one day I will wake up to a phone call that they have a cure. Till then we don't let things get us down. We don't let this illness define us. We treat it as something that had to be done so we can blow out the candles together come his next birthday.
Live Laugh Love Grow, Hug our children more, Hold on Tighter for one extra min, and Pray
That my story
Live Laugh Love Grow, Hug our children more, Hold on Tighter for one extra min, and Pray
That my story
Lets see what let us to the final conclusion on Nov 25 2002 that determined my son had Cf. From early on Eric had been a sickly child. He had pnemonia for the first time at age 9mths. He also was not gaining weight. I also was constantly asking why when I kissed my child it seemed as though I was kissing a salt shaker. They said some kids are just that way. My first child I didn't know better. After constant pneumonia and bronchitis and other problems (and my nagging to find out why) they finally tested him at the age of four (97). The test came back negative. He finally got in a spell of where he wasn't sick. Mind you he still wasn't growing very good. I changed doctors in 99 (my fourth one). He started getting sick again. In sept 02 he got bronchitis it wouldn't go away. In Oct 02 we were told he now had pneumonia. We were sent for testing at a cf hospital in Augusta Ga. On Nov 02 our lives changed (mind you i am pregnant with our third child due in april 03). We found out Eric had cf. I was scared, relieved, worried, and overwhelmed all at the same time. Finally we had a diagnosis to what was wrong. Relieved to be able to do something for him. But scared as to what was ahead for us. A baby on the way and a son who all I could think about at the time that was going to be taken away from us before he could live his life. All I could think about was I couldn't lose him. Now we have learned to cope. We look forward to everyday we have. We fight for everyday we are given. We live life like there is no tommrow. Our new motto is to live, laugh and pray for a new day. A day that one day I will wake up to a phone call that they have a cure. Till then we don't let things get us down. We don't let this illness define us. We treat it as something that had to be done so we can blow out the candles together come his next birthday.
Live Laugh Love Grow, Hug our children more, Hold on Tighter for one extra min, and Pray
That my story
Live Laugh Love Grow, Hug our children more, Hold on Tighter for one extra min, and Pray
That my story
Lets see what let us to the final conclusion on Nov 25 2002 that determined my son had Cf. From early on Eric had been a sickly child. He had pnemonia for the first time at age 9mths. He also was not gaining weight. I also was constantly asking why when I kissed my child it seemed as though I was kissing a salt shaker. They said some kids are just that way. My first child I didn't know better. After constant pneumonia and bronchitis and other problems (and my nagging to find out why) they finally tested him at the age of four (97). The test came back negative. He finally got in a spell of where he wasn't sick. Mind you he still wasn't growing very good. I changed doctors in 99 (my fourth one). He started getting sick again. In sept 02 he got bronchitis it wouldn't go away. In Oct 02 we were told he now had pneumonia. We were sent for testing at a cf hospital in Augusta Ga. On Nov 02 our lives changed (mind you i am pregnant with our third child due in april 03). We found out Eric had cf. I was scared, relieved, worried, and overwhelmed all at the same time. Finally we had a diagnosis to what was wrong. Relieved to be able to do something for him. But scared as to what was ahead for us. A baby on the way and a son who all I could think about at the time that was going to be taken away from us before he could live his life. All I could think about was I couldn't lose him. Now we have learned to cope. We look forward to everyday we have. We fight for everyday we are given. We live life like there is no tommrow. Our new motto is to live, laugh and pray for a new day. A day that one day I will wake up to a phone call that they have a cure. Till then we don't let things get us down. We don't let this illness define us. We treat it as something that had to be done so we can blow out the candles together come his next birthday.
Live Laugh Love Grow, Hug our children more, Hold on Tighter for one extra min, and Pray
That my story
Live Laugh Love Grow, Hug our children more, Hold on Tighter for one extra min, and Pray
That my story
Emily65Roses
New member
Totally off-topic smart@ss comment:
Why is everyone's story history? History was always the most boring subject...
I had meconium ileus when I was born, and had it surgically removed when I was 2 days old. The rest is philosophy!
Why is everyone's story history? History was always the most boring subject...
I had meconium ileus when I was born, and had it surgically removed when I was 2 days old. The rest is philosophy!
Emily65Roses
New member
Totally off-topic smart@ss comment:
Why is everyone's story history? History was always the most boring subject...
I had meconium ileus when I was born, and had it surgically removed when I was 2 days old. The rest is philosophy!
Why is everyone's story history? History was always the most boring subject...
I had meconium ileus when I was born, and had it surgically removed when I was 2 days old. The rest is philosophy!
Emily65Roses
New member
Totally off-topic smart@ss comment:
Why is everyone's story history? History was always the most boring subject...
I had meconium ileus when I was born, and had it surgically removed when I was 2 days old. The rest is philosophy!
Why is everyone's story history? History was always the most boring subject...
I had meconium ileus when I was born, and had it surgically removed when I was 2 days old. The rest is philosophy!
M
Mommafirst
Guest
How about ..... the rest is herstory!!!