jdprecious
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TonyaH</b></i>
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)</end quote></div>
My dad also died of Pulmonary Fibrosis at the age of 48. This 9/11 will be 3 years and it still hurts like hell. My 5 yr old daughter has CF and was dx just months after his passing. Similar situation to what you experienced with your mother and son. Your story was similar to mine and struck a cord. I cant stop tearin up tonight!!!! Hugs to you Tonya!
Much Love
Jess
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)</end quote></div>
My dad also died of Pulmonary Fibrosis at the age of 48. This 9/11 will be 3 years and it still hurts like hell. My 5 yr old daughter has CF and was dx just months after his passing. Similar situation to what you experienced with your mother and son. Your story was similar to mine and struck a cord. I cant stop tearin up tonight!!!! Hugs to you Tonya!
Much Love
Jess