CFsonofaCFdaughter
New member
Just wondering how rare this is. Cf son of a CF daughter.
I find it a mixed bag this knowing how I'll die and being able to roughly calculate the time of my demise.
I was just thinking how horrible it would be to know the exact time and manner of ones own death.
Right after I had that thought, my sister called me and said she'd gotten tested at university of Iowa at Iowa City and was positive for CF. She said I should go get tested too so i did.
We both inherited the F508del from our mother and the d1152h from our father. our father died at 70 of throat cancer, and complications from the surgery (perforated esophagus allowed food into his lungs regularly). He might have had CF since people can live that long if they're homozygous d1152h. Although my father was a heavy drinker and a heavy smoker so it's likely he was just a carrier. His drinking and smoking would have killed him earlier if he'd had CF.
But my mother, a very intelligent woman, who was frequently in Iowa City hosp., met a relative of my fathers who had CF. Hindsight makes me wonder; "Did my mother know and just not want to think about it?
I think it is very unlikely. I know that if she had known she would have urged us to get a sweat test and genetic testing if that was positive.
So I can only speculate that her denial was subconscious and prevented her from realizing that her children might also have CF. I am kind of happy she was spared that news. She was a trooper all her life, and I'm not sure how this would make her feel.
My feelings are mixed.
My mother expressed a concern that when we cured CF, if we eliminated the genetics entirely, then people like my mother and I would never again exist.
We wonder, both of us, if this would be a good thing or a bad thing.
I think that my life was/is wonderful and full. I worked 12 and 16 hours a day doing community organizing working on making the world a better place. In the end, I doubt my somewhat shortened time here will lessen the amount of life I've lived. It is possible that I've lived my life more fully than the average. One huge reason was my mother's attitude, She was vibrantly alive and that was something I emulate to this day.
I feel like I have been alive, perhaps more so than ordinary, healthy, people who don't have the impetus to fully experience life that CF people have.
We, who burn so brightly, burn out early. This is how I think about the people I've known that have CF. They're all amazing, bright stars.
It would be a great loss to lose us forever I think.
I find it a mixed bag this knowing how I'll die and being able to roughly calculate the time of my demise.
I was just thinking how horrible it would be to know the exact time and manner of ones own death.
Right after I had that thought, my sister called me and said she'd gotten tested at university of Iowa at Iowa City and was positive for CF. She said I should go get tested too so i did.
We both inherited the F508del from our mother and the d1152h from our father. our father died at 70 of throat cancer, and complications from the surgery (perforated esophagus allowed food into his lungs regularly). He might have had CF since people can live that long if they're homozygous d1152h. Although my father was a heavy drinker and a heavy smoker so it's likely he was just a carrier. His drinking and smoking would have killed him earlier if he'd had CF.
But my mother, a very intelligent woman, who was frequently in Iowa City hosp., met a relative of my fathers who had CF. Hindsight makes me wonder; "Did my mother know and just not want to think about it?
I think it is very unlikely. I know that if she had known she would have urged us to get a sweat test and genetic testing if that was positive.
So I can only speculate that her denial was subconscious and prevented her from realizing that her children might also have CF. I am kind of happy she was spared that news. She was a trooper all her life, and I'm not sure how this would make her feel.
My feelings are mixed.
My mother expressed a concern that when we cured CF, if we eliminated the genetics entirely, then people like my mother and I would never again exist.
We wonder, both of us, if this would be a good thing or a bad thing.
I think that my life was/is wonderful and full. I worked 12 and 16 hours a day doing community organizing working on making the world a better place. In the end, I doubt my somewhat shortened time here will lessen the amount of life I've lived. It is possible that I've lived my life more fully than the average. One huge reason was my mother's attitude, She was vibrantly alive and that was something I emulate to this day.
I feel like I have been alive, perhaps more so than ordinary, healthy, people who don't have the impetus to fully experience life that CF people have.
We, who burn so brightly, burn out early. This is how I think about the people I've known that have CF. They're all amazing, bright stars.
It would be a great loss to lose us forever I think.
