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- Thread starter anonymous
- Start date
Id just like to say how brave u are. My fiance has CF and is 22. He was told he wouldnt live past 21 but he has stood the odds. The doctors have said that he is pretty healthy for him having CF but I find it so hard to cope. I cry every other day. I keep a brave face on around him though.
He seems to get on with everyday life. Never getting down about coughing every morning and having to take so many pills. I dont know how he does it.
Id love to have children with him but I dont evre see it happening. Ive researched fertility on the internet but they always says most men with CF are infertile.
He seems to get on with everyday life. Never getting down about coughing every morning and having to take so many pills. I dont know how he does it.
Id love to have children with him but I dont evre see it happening. Ive researched fertility on the internet but they always says most men with CF are infertile.
Id just like to say how brave u are. My fiance has CF and is 22. He was told he wouldnt live past 21 but he has stood the odds. The doctors have said that he is pretty healthy for him having CF but I find it so hard to cope. I cry every other day. I keep a brave face on around him though.
He seems to get on with everyday life. Never getting down about coughing every morning and having to take so many pills. I dont know how he does it.
Id love to have children with him but I dont evre see it happening. Ive researched fertility on the internet but they always says most men with CF are infertile.
He seems to get on with everyday life. Never getting down about coughing every morning and having to take so many pills. I dont know how he does it.
Id love to have children with him but I dont evre see it happening. Ive researched fertility on the internet but they always says most men with CF are infertile.
I cant believe that people are STILL being told their odds of living as soon as a dx is given. I can understand 30 years ago (or more) when I was dx & they didnt have any new meds, the illness was still being learned about etc. But with the advances & extension of the "average" life span.....I find it totally wrong that such poor outlooks are given to people still. I realize CF isnt all peaches & cream, but for crying out loud.......My parents are a perfect example of the "untruths" or "unknown" by them being told at age 7 which is when I was dx that I wouldnt live to my teens. In my teens I was told I wouldnt live to my twenties. In my twenties I was told I wont make it to my thirties. Come on! Here I am 30 years later with problems that have increased, but lots of fight left. Until an actual cure is found.....we all know that CF is eventually fatal. The ??? is WHEN for EACH person does this occur. All the info given is so statistical which is helpful with certain things. But when genetic, environment, life style, access to healthcare/meds, finances & personal input all reflects on the timing......how on earth can you put a number on that!. I guess this really hit a nerve this morning & I apologize. I just HATE to see people put in an immediate panic!
I cant believe that people are STILL being told their odds of living as soon as a dx is given. I can understand 30 years ago (or more) when I was dx & they didnt have any new meds, the illness was still being learned about etc. But with the advances & extension of the "average" life span.....I find it totally wrong that such poor outlooks are given to people still. I realize CF isnt all peaches & cream, but for crying out loud.......My parents are a perfect example of the "untruths" or "unknown" by them being told at age 7 which is when I was dx that I wouldnt live to my teens. In my teens I was told I wouldnt live to my twenties. In my twenties I was told I wont make it to my thirties. Come on! Here I am 30 years later with problems that have increased, but lots of fight left. Until an actual cure is found.....we all know that CF is eventually fatal. The ??? is WHEN for EACH person does this occur. All the info given is so statistical which is helpful with certain things. But when genetic, environment, life style, access to healthcare/meds, finances & personal input all reflects on the timing......how on earth can you put a number on that!. I guess this really hit a nerve this morning & I apologize. I just HATE to see people put in an immediate panic!
well i've written this a few times before and i'll write it again.... My first boyfriend who i was SOOOOO in love with was perfectly healthy. After we broke up i ran into him many years later and he still looked great. Then one day i was reading my local news paper and read about a man who was stabbed and died. It was him, my ex boyfriend. <img src="i/expressions/face-icon-small-sad.gif" border="0"> i was horrified, but it proved one verfy important thing to me. Statistics mean crap ! by statistics he should have outlived me since i was the one with a serious condition and he was perfectly healthy. My parents were told when i was diagnosed they would lose me by the age of 5...........well they didnt thank God <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"> The rule of thumb for everyone, healthy or not is to love as much as you can while you can. No-one knows when their time is actually up and it can be more than difficult to predict.
well i've written this a few times before and i'll write it again.... My first boyfriend who i was SOOOOO in love with was perfectly healthy. After we broke up i ran into him many years later and he still looked great. Then one day i was reading my local news paper and read about a man who was stabbed and died. It was him, my ex boyfriend. <img src="i/expressions/face-icon-small-sad.gif" border="0"> i was horrified, but it proved one verfy important thing to me. Statistics mean crap ! by statistics he should have outlived me since i was the one with a serious condition and he was perfectly healthy. My parents were told when i was diagnosed they would lose me by the age of 5...........well they didnt thank God <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"> The rule of thumb for everyone, healthy or not is to love as much as you can while you can. No-one knows when their time is actually up and it can be more than difficult to predict.
Such good advice Diane!
Statistics are always scarey and can be manipulated to prove a ton of different things. I try not to pay to much attention. On the subject of statistics. One doctor told us when my kids were sick, "your kids are amoung the 25% sickest in our clinic". What the heck does that mean? Talk about bedside manner.
How do they determine who is sickest?
Statistics are always scarey and can be manipulated to prove a ton of different things. I try not to pay to much attention. On the subject of statistics. One doctor told us when my kids were sick, "your kids are amoung the 25% sickest in our clinic". What the heck does that mean? Talk about bedside manner.
How do they determine who is sickest?
Such good advice Diane!
Statistics are always scarey and can be manipulated to prove a ton of different things. I try not to pay to much attention. On the subject of statistics. One doctor told us when my kids were sick, "your kids are amoung the 25% sickest in our clinic". What the heck does that mean? Talk about bedside manner.
How do they determine who is sickest?
Statistics are always scarey and can be manipulated to prove a ton of different things. I try not to pay to much attention. On the subject of statistics. One doctor told us when my kids were sick, "your kids are amoung the 25% sickest in our clinic". What the heck does that mean? Talk about bedside manner.
How do they determine who is sickest?
S
skh
Guest
Hi Jessica, it's good that you want to learn more about your boyfriend's condition. Good for you! I would be upset if my daughter's doc told me that she only had a 50/50 chance of making it to 20. How is your boyfriend's health right now? My advice is to not focus on what his doctor told him, learn all you can about the treatments he could/should be taking and just give him your support and love. I am sure it is a comfort to him just knowing you are beside him through this.
Sue
Sue
S
skh
Guest
Hi Jessica, it's good that you want to learn more about your boyfriend's condition. Good for you! I would be upset if my daughter's doc told me that she only had a 50/50 chance of making it to 20. How is your boyfriend's health right now? My advice is to not focus on what his doctor told him, learn all you can about the treatments he could/should be taking and just give him your support and love. I am sure it is a comfort to him just knowing you are beside him through this.
Sue
Sue
there are a lot of 24 year olds on this board. Just an observation.
Let's form a quarter century group when we all turn 25 <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll join June 28 <img src="i/expressions/face-icon-small-smile.gif" border="0">
Amy/24/CF/diagnosed 6 mo.
Let's form a quarter century group when we all turn 25 <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll join June 28 <img src="i/expressions/face-icon-small-smile.gif" border="0">
Amy/24/CF/diagnosed 6 mo.
there are a lot of 24 year olds on this board. Just an observation.
Let's form a quarter century group when we all turn 25 <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll join June 28 <img src="i/expressions/face-icon-small-smile.gif" border="0">
Amy/24/CF/diagnosed 6 mo.
Let's form a quarter century group when we all turn 25 <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll join June 28 <img src="i/expressions/face-icon-small-smile.gif" border="0">
Amy/24/CF/diagnosed 6 mo.
Wow.. thanks to everyone who has helped me through all of this. I think it was a couple of years ago when the doctors told him he wouldnt live past 20. Im not exactly sure. Reading everyone's stories gives me so much hope that he will stay strong and outlive what the doctors said. well hes 19 and in 5 months he'll be 20 and lately he's been kind of down in the dumps and i just want to tell him everything will be okay. im scared to but i feel like he is trying to pull away from me because he doesnt want me to hurt if something does happen to him. he told me he was scared to fall in love or have someone fall in love with him because he's afraid something will happen to him. and honestly i fell in love with him and i'll do anything to help him. and all i know to do is if he does try to pull away, just stay there for him to fall back on if he needs me. thanks to all for your help
Love Always
Jess
Love Always
Jess
Wow.. thanks to everyone who has helped me through all of this. I think it was a couple of years ago when the doctors told him he wouldnt live past 20. Im not exactly sure. Reading everyone's stories gives me so much hope that he will stay strong and outlive what the doctors said. well hes 19 and in 5 months he'll be 20 and lately he's been kind of down in the dumps and i just want to tell him everything will be okay. im scared to but i feel like he is trying to pull away from me because he doesnt want me to hurt if something does happen to him. he told me he was scared to fall in love or have someone fall in love with him because he's afraid something will happen to him. and honestly i fell in love with him and i'll do anything to help him. and all i know to do is if he does try to pull away, just stay there for him to fall back on if he needs me. thanks to all for your help
Love Always
Jess
Love Always
Jess
oh.. also i know he goes to the hospital like every 6 months to get checkups or something.. he wont let me go visit him... and i dont know what his condition is.. what ive noticed is he coughs.. alot... and hes like 100 pounds and he eats so so much.. and he still cant gain any weight...
Jess
Jess
oh.. also i know he goes to the hospital like every 6 months to get checkups or something.. he wont let me go visit him... and i dont know what his condition is.. what ive noticed is he coughs.. alot... and hes like 100 pounds and he eats so so much.. and he still cant gain any weight...
Jess
Jess