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Family history of CF
- Thread starter jodijp
- Start date
T
TonyaH
Guest
Hi everyone,
My mother had been sick all of my life, diagnosed with broncho pulmonary aspergillosis and acute bronchiectasis. She had all of the classic CF symptoms..never weighed more than 80 lbs in her life, in and out of the hospital for 3 week stints about 2-3 times a year, always responded favorably to IV tobramycin and other CF meds, at-home iv care always followed her hospital stays. But she always tested negatively on her sweat test. I remember my brother, sister, and I being tested as kids to try to help diagnose my mom. In the end, it was a major pseudomonas infection that kept her in ICU for a month before she was gone. She was the most wonderful mother and friend I could have asked for and I lost her at age 24 when she was only 45 years old. She left us just two days before my son was born. I remember sitting in the cafeteria of the hospital on Christmas day with a cup of hot chocolate, two weeks overdue with my son, knowing the end was near, asking my dad and my husband how we would continue life without lung disease. It was all I ever knew! Well do I ever regret making that statement. At two months of age, after being failure to thrive, Andrew was diagnosed. Andrew will be 10 years old next Jauary 11th. That means on January 9th it will be 10 years since I've given my mom a hug. After Andrew wad diagnosed, I called my mom's pulmonologist to ask some questions. I'll never forget the sound in his voice...
As far as other family members, my mom's side runs rampant with symptoms...major sinus problems, frequent respiratory infections, pulmonary fibrosis (although docs will say does not have anything to do with CF), and many gastro issues. I'm a firm believer in carrier symptoms.
Sorry for rambling..this topic hits kind of close to me!
My mother had been sick all of my life, diagnosed with broncho pulmonary aspergillosis and acute bronchiectasis. She had all of the classic CF symptoms..never weighed more than 80 lbs in her life, in and out of the hospital for 3 week stints about 2-3 times a year, always responded favorably to IV tobramycin and other CF meds, at-home iv care always followed her hospital stays. But she always tested negatively on her sweat test. I remember my brother, sister, and I being tested as kids to try to help diagnose my mom. In the end, it was a major pseudomonas infection that kept her in ICU for a month before she was gone. She was the most wonderful mother and friend I could have asked for and I lost her at age 24 when she was only 45 years old. She left us just two days before my son was born. I remember sitting in the cafeteria of the hospital on Christmas day with a cup of hot chocolate, two weeks overdue with my son, knowing the end was near, asking my dad and my husband how we would continue life without lung disease. It was all I ever knew! Well do I ever regret making that statement. At two months of age, after being failure to thrive, Andrew was diagnosed. Andrew will be 10 years old next Jauary 11th. That means on January 9th it will be 10 years since I've given my mom a hug. After Andrew wad diagnosed, I called my mom's pulmonologist to ask some questions. I'll never forget the sound in his voice...
As far as other family members, my mom's side runs rampant with symptoms...major sinus problems, frequent respiratory infections, pulmonary fibrosis (although docs will say does not have anything to do with CF), and many gastro issues. I'm a firm believer in carrier symptoms.
Sorry for rambling..this topic hits kind of close to me!
T
TonyaH
Guest
Hi everyone,
My mother had been sick all of my life, diagnosed with broncho pulmonary aspergillosis and acute bronchiectasis. She had all of the classic CF symptoms..never weighed more than 80 lbs in her life, in and out of the hospital for 3 week stints about 2-3 times a year, always responded favorably to IV tobramycin and other CF meds, at-home iv care always followed her hospital stays. But she always tested negatively on her sweat test. I remember my brother, sister, and I being tested as kids to try to help diagnose my mom. In the end, it was a major pseudomonas infection that kept her in ICU for a month before she was gone. She was the most wonderful mother and friend I could have asked for and I lost her at age 24 when she was only 45 years old. She left us just two days before my son was born. I remember sitting in the cafeteria of the hospital on Christmas day with a cup of hot chocolate, two weeks overdue with my son, knowing the end was near, asking my dad and my husband how we would continue life without lung disease. It was all I ever knew! Well do I ever regret making that statement. At two months of age, after being failure to thrive, Andrew was diagnosed. Andrew will be 10 years old next Jauary 11th. That means on January 9th it will be 10 years since I've given my mom a hug. After Andrew wad diagnosed, I called my mom's pulmonologist to ask some questions. I'll never forget the sound in his voice...
As far as other family members, my mom's side runs rampant with symptoms...major sinus problems, frequent respiratory infections, pulmonary fibrosis (although docs will say does not have anything to do with CF), and many gastro issues. I'm a firm believer in carrier symptoms.
Sorry for rambling..this topic hits kind of close to me!
My mother had been sick all of my life, diagnosed with broncho pulmonary aspergillosis and acute bronchiectasis. She had all of the classic CF symptoms..never weighed more than 80 lbs in her life, in and out of the hospital for 3 week stints about 2-3 times a year, always responded favorably to IV tobramycin and other CF meds, at-home iv care always followed her hospital stays. But she always tested negatively on her sweat test. I remember my brother, sister, and I being tested as kids to try to help diagnose my mom. In the end, it was a major pseudomonas infection that kept her in ICU for a month before she was gone. She was the most wonderful mother and friend I could have asked for and I lost her at age 24 when she was only 45 years old. She left us just two days before my son was born. I remember sitting in the cafeteria of the hospital on Christmas day with a cup of hot chocolate, two weeks overdue with my son, knowing the end was near, asking my dad and my husband how we would continue life without lung disease. It was all I ever knew! Well do I ever regret making that statement. At two months of age, after being failure to thrive, Andrew was diagnosed. Andrew will be 10 years old next Jauary 11th. That means on January 9th it will be 10 years since I've given my mom a hug. After Andrew wad diagnosed, I called my mom's pulmonologist to ask some questions. I'll never forget the sound in his voice...
As far as other family members, my mom's side runs rampant with symptoms...major sinus problems, frequent respiratory infections, pulmonary fibrosis (although docs will say does not have anything to do with CF), and many gastro issues. I'm a firm believer in carrier symptoms.
Sorry for rambling..this topic hits kind of close to me!
T
TonyaH
Guest
Hi everyone,
My mother had been sick all of my life, diagnosed with broncho pulmonary aspergillosis and acute bronchiectasis. She had all of the classic CF symptoms..never weighed more than 80 lbs in her life, in and out of the hospital for 3 week stints about 2-3 times a year, always responded favorably to IV tobramycin and other CF meds, at-home iv care always followed her hospital stays. But she always tested negatively on her sweat test. I remember my brother, sister, and I being tested as kids to try to help diagnose my mom. In the end, it was a major pseudomonas infection that kept her in ICU for a month before she was gone. She was the most wonderful mother and friend I could have asked for and I lost her at age 24 when she was only 45 years old. She left us just two days before my son was born. I remember sitting in the cafeteria of the hospital on Christmas day with a cup of hot chocolate, two weeks overdue with my son, knowing the end was near, asking my dad and my husband how we would continue life without lung disease. It was all I ever knew! Well do I ever regret making that statement. At two months of age, after being failure to thrive, Andrew was diagnosed. Andrew will be 10 years old next Jauary 11th. That means on January 9th it will be 10 years since I've given my mom a hug. After Andrew wad diagnosed, I called my mom's pulmonologist to ask some questions. I'll never forget the sound in his voice...
As far as other family members, my mom's side runs rampant with symptoms...major sinus problems, frequent respiratory infections, pulmonary fibrosis (although docs will say does not have anything to do with CF), and many gastro issues. I'm a firm believer in carrier symptoms.
Sorry for rambling..this topic hits kind of close to me!
My mother had been sick all of my life, diagnosed with broncho pulmonary aspergillosis and acute bronchiectasis. She had all of the classic CF symptoms..never weighed more than 80 lbs in her life, in and out of the hospital for 3 week stints about 2-3 times a year, always responded favorably to IV tobramycin and other CF meds, at-home iv care always followed her hospital stays. But she always tested negatively on her sweat test. I remember my brother, sister, and I being tested as kids to try to help diagnose my mom. In the end, it was a major pseudomonas infection that kept her in ICU for a month before she was gone. She was the most wonderful mother and friend I could have asked for and I lost her at age 24 when she was only 45 years old. She left us just two days before my son was born. I remember sitting in the cafeteria of the hospital on Christmas day with a cup of hot chocolate, two weeks overdue with my son, knowing the end was near, asking my dad and my husband how we would continue life without lung disease. It was all I ever knew! Well do I ever regret making that statement. At two months of age, after being failure to thrive, Andrew was diagnosed. Andrew will be 10 years old next Jauary 11th. That means on January 9th it will be 10 years since I've given my mom a hug. After Andrew wad diagnosed, I called my mom's pulmonologist to ask some questions. I'll never forget the sound in his voice...
As far as other family members, my mom's side runs rampant with symptoms...major sinus problems, frequent respiratory infections, pulmonary fibrosis (although docs will say does not have anything to do with CF), and many gastro issues. I'm a firm believer in carrier symptoms.
Sorry for rambling..this topic hits kind of close to me!
T
TonyaH
Guest
Hi everyone,
My mother had been sick all of my life, diagnosed with broncho pulmonary aspergillosis and acute bronchiectasis. She had all of the classic CF symptoms..never weighed more than 80 lbs in her life, in and out of the hospital for 3 week stints about 2-3 times a year, always responded favorably to IV tobramycin and other CF meds, at-home iv care always followed her hospital stays. But she always tested negatively on her sweat test. I remember my brother, sister, and I being tested as kids to try to help diagnose my mom. In the end, it was a major pseudomonas infection that kept her in ICU for a month before she was gone. She was the most wonderful mother and friend I could have asked for and I lost her at age 24 when she was only 45 years old. She left us just two days before my son was born. I remember sitting in the cafeteria of the hospital on Christmas day with a cup of hot chocolate, two weeks overdue with my son, knowing the end was near, asking my dad and my husband how we would continue life without lung disease. It was all I ever knew! Well do I ever regret making that statement. At two months of age, after being failure to thrive, Andrew was diagnosed. Andrew will be 10 years old next Jauary 11th. That means on January 9th it will be 10 years since I've given my mom a hug. After Andrew wad diagnosed, I called my mom's pulmonologist to ask some questions. I'll never forget the sound in his voice...
As far as other family members, my mom's side runs rampant with symptoms...major sinus problems, frequent respiratory infections, pulmonary fibrosis (although docs will say does not have anything to do with CF), and many gastro issues. I'm a firm believer in carrier symptoms.
Sorry for rambling..this topic hits kind of close to me!
My mother had been sick all of my life, diagnosed with broncho pulmonary aspergillosis and acute bronchiectasis. She had all of the classic CF symptoms..never weighed more than 80 lbs in her life, in and out of the hospital for 3 week stints about 2-3 times a year, always responded favorably to IV tobramycin and other CF meds, at-home iv care always followed her hospital stays. But she always tested negatively on her sweat test. I remember my brother, sister, and I being tested as kids to try to help diagnose my mom. In the end, it was a major pseudomonas infection that kept her in ICU for a month before she was gone. She was the most wonderful mother and friend I could have asked for and I lost her at age 24 when she was only 45 years old. She left us just two days before my son was born. I remember sitting in the cafeteria of the hospital on Christmas day with a cup of hot chocolate, two weeks overdue with my son, knowing the end was near, asking my dad and my husband how we would continue life without lung disease. It was all I ever knew! Well do I ever regret making that statement. At two months of age, after being failure to thrive, Andrew was diagnosed. Andrew will be 10 years old next Jauary 11th. That means on January 9th it will be 10 years since I've given my mom a hug. After Andrew wad diagnosed, I called my mom's pulmonologist to ask some questions. I'll never forget the sound in his voice...
As far as other family members, my mom's side runs rampant with symptoms...major sinus problems, frequent respiratory infections, pulmonary fibrosis (although docs will say does not have anything to do with CF), and many gastro issues. I'm a firm believer in carrier symptoms.
Sorry for rambling..this topic hits kind of close to me!
T
TonyaH
Guest
Hi everyone,
My mother had been sick all of my life, diagnosed with broncho pulmonary aspergillosis and acute bronchiectasis. She had all of the classic CF symptoms..never weighed more than 80 lbs in her life, in and out of the hospital for 3 week stints about 2-3 times a year, always responded favorably to IV tobramycin and other CF meds, at-home iv care always followed her hospital stays. But she always tested negatively on her sweat test. I remember my brother, sister, and I being tested as kids to try to help diagnose my mom. In the end, it was a major pseudomonas infection that kept her in ICU for a month before she was gone. She was the most wonderful mother and friend I could have asked for and I lost her at age 24 when she was only 45 years old. She left us just two days before my son was born. I remember sitting in the cafeteria of the hospital on Christmas day with a cup of hot chocolate, two weeks overdue with my son, knowing the end was near, asking my dad and my husband how we would continue life without lung disease. It was all I ever knew! Well do I ever regret making that statement. At two months of age, after being failure to thrive, Andrew was diagnosed. Andrew will be 10 years old next Jauary 11th. That means on January 9th it will be 10 years since I've given my mom a hug. After Andrew wad diagnosed, I called my mom's pulmonologist to ask some questions. I'll never forget the sound in his voice...
As far as other family members, my mom's side runs rampant with symptoms...major sinus problems, frequent respiratory infections, pulmonary fibrosis (although docs will say does not have anything to do with CF), and many gastro issues. I'm a firm believer in carrier symptoms.
Sorry for rambling..this topic hits kind of close to me!
My mother had been sick all of my life, diagnosed with broncho pulmonary aspergillosis and acute bronchiectasis. She had all of the classic CF symptoms..never weighed more than 80 lbs in her life, in and out of the hospital for 3 week stints about 2-3 times a year, always responded favorably to IV tobramycin and other CF meds, at-home iv care always followed her hospital stays. But she always tested negatively on her sweat test. I remember my brother, sister, and I being tested as kids to try to help diagnose my mom. In the end, it was a major pseudomonas infection that kept her in ICU for a month before she was gone. She was the most wonderful mother and friend I could have asked for and I lost her at age 24 when she was only 45 years old. She left us just two days before my son was born. I remember sitting in the cafeteria of the hospital on Christmas day with a cup of hot chocolate, two weeks overdue with my son, knowing the end was near, asking my dad and my husband how we would continue life without lung disease. It was all I ever knew! Well do I ever regret making that statement. At two months of age, after being failure to thrive, Andrew was diagnosed. Andrew will be 10 years old next Jauary 11th. That means on January 9th it will be 10 years since I've given my mom a hug. After Andrew wad diagnosed, I called my mom's pulmonologist to ask some questions. I'll never forget the sound in his voice...
As far as other family members, my mom's side runs rampant with symptoms...major sinus problems, frequent respiratory infections, pulmonary fibrosis (although docs will say does not have anything to do with CF), and many gastro issues. I'm a firm believer in carrier symptoms.
Sorry for rambling..this topic hits kind of close to me!
M
Mommafirst
Guest
My daughter's diagnosis was a total shock to us, especially after having two other non-CF kids. But in hindsight, I know that my paternal grandfather's sister had a daughter in the 1940's that died before the age of 3. I don't have anyone still around that remembers why, but considering they were ALL askensi jews, I'm highly suspicious that it might of been CF.
My husband is one of 24 grandkids, making my daughter one of nearly 35 great grandkids, on his fathers side and none have CF.
I think this is a very interesting topic. I don't know if all these childhood deaths prior to say the 1950's are traceable, since so little was known of CF, but it is very interesting.
My husband is one of 24 grandkids, making my daughter one of nearly 35 great grandkids, on his fathers side and none have CF.
I think this is a very interesting topic. I don't know if all these childhood deaths prior to say the 1950's are traceable, since so little was known of CF, but it is very interesting.
M
Mommafirst
Guest
My daughter's diagnosis was a total shock to us, especially after having two other non-CF kids. But in hindsight, I know that my paternal grandfather's sister had a daughter in the 1940's that died before the age of 3. I don't have anyone still around that remembers why, but considering they were ALL askensi jews, I'm highly suspicious that it might of been CF.
My husband is one of 24 grandkids, making my daughter one of nearly 35 great grandkids, on his fathers side and none have CF.
I think this is a very interesting topic. I don't know if all these childhood deaths prior to say the 1950's are traceable, since so little was known of CF, but it is very interesting.
My husband is one of 24 grandkids, making my daughter one of nearly 35 great grandkids, on his fathers side and none have CF.
I think this is a very interesting topic. I don't know if all these childhood deaths prior to say the 1950's are traceable, since so little was known of CF, but it is very interesting.
M
Mommafirst
Guest
My daughter's diagnosis was a total shock to us, especially after having two other non-CF kids. But in hindsight, I know that my paternal grandfather's sister had a daughter in the 1940's that died before the age of 3. I don't have anyone still around that remembers why, but considering they were ALL askensi jews, I'm highly suspicious that it might of been CF.
My husband is one of 24 grandkids, making my daughter one of nearly 35 great grandkids, on his fathers side and none have CF.
I think this is a very interesting topic. I don't know if all these childhood deaths prior to say the 1950's are traceable, since so little was known of CF, but it is very interesting.
My husband is one of 24 grandkids, making my daughter one of nearly 35 great grandkids, on his fathers side and none have CF.
I think this is a very interesting topic. I don't know if all these childhood deaths prior to say the 1950's are traceable, since so little was known of CF, but it is very interesting.
M
Mommafirst
Guest
My daughter's diagnosis was a total shock to us, especially after having two other non-CF kids. But in hindsight, I know that my paternal grandfather's sister had a daughter in the 1940's that died before the age of 3. I don't have anyone still around that remembers why, but considering they were ALL askensi jews, I'm highly suspicious that it might of been CF.
My husband is one of 24 grandkids, making my daughter one of nearly 35 great grandkids, on his fathers side and none have CF.
I think this is a very interesting topic. I don't know if all these childhood deaths prior to say the 1950's are traceable, since so little was known of CF, but it is very interesting.
My husband is one of 24 grandkids, making my daughter one of nearly 35 great grandkids, on his fathers side and none have CF.
I think this is a very interesting topic. I don't know if all these childhood deaths prior to say the 1950's are traceable, since so little was known of CF, but it is very interesting.
M
Mommafirst
Guest
My daughter's diagnosis was a total shock to us, especially after having two other non-CF kids. But in hindsight, I know that my paternal grandfather's sister had a daughter in the 1940's that died before the age of 3. I don't have anyone still around that remembers why, but considering they were ALL askensi jews, I'm highly suspicious that it might of been CF.
My husband is one of 24 grandkids, making my daughter one of nearly 35 great grandkids, on his fathers side and none have CF.
I think this is a very interesting topic. I don't know if all these childhood deaths prior to say the 1950's are traceable, since so little was known of CF, but it is very interesting.
My husband is one of 24 grandkids, making my daughter one of nearly 35 great grandkids, on his fathers side and none have CF.
I think this is a very interesting topic. I don't know if all these childhood deaths prior to say the 1950's are traceable, since so little was known of CF, but it is very interesting.