Should I accept 75 % lung function im my

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cherishthree

New member
Thanks for responding it seems hard for me to speek up. One because he was diagnosed so late I am thankfull for that and the same time mad. Hannah has cultured Staph aures Mrsa and pa. Christopher so far normal respitory flora? They both have the same mutatin but Hannah has severe ftt 39 lbs an 44 inches at 7 years old and Christopher no ftt ever he is rather normal for his age 83 lbs and 54 inches at 11 years old. His main problem is respitory their mutation is mainly just respitory but Hannah is going in for a g tube ivaluation in two weeks all is happening fast but waiting to long if you know what I mean. This seems to be a secret world when I talk to family about it they brush me off they always have saying you where small when you where young uncle so and so had asthma and was admitted once or twice for pneumonia so why all the fusss? This will pass they tell me!! HELP!! Is this normal !!!
 
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cherishthree

New member
Thanks for responding it seems hard for me to speek up. One because he was diagnosed so late I am thankfull for that and the same time mad. Hannah has cultured Staph aures Mrsa and pa. Christopher so far normal respitory flora? They both have the same mutatin but Hannah has severe ftt 39 lbs an 44 inches at 7 years old and Christopher no ftt ever he is rather normal for his age 83 lbs and 54 inches at 11 years old. His main problem is respitory their mutation is mainly just respitory but Hannah is going in for a g tube ivaluation in two weeks all is happening fast but waiting to long if you know what I mean. This seems to be a secret world when I talk to family about it they brush me off they always have saying you where small when you where young uncle so and so had asthma and was admitted once or twice for pneumonia so why all the fusss? This will pass they tell me!! HELP!! Is this normal !!!
 
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Emily65Roses

New member
As for your children being so different... there are cases of identical twins (therefore, same exact genes) having very different cases of CF. It's just how it works, it's such a varying disease.

As for your family, it's not "normal" but it does seem to happen a lot. For a long time my paternal grandparents blamed my mother for my CF, saying my father had nothing to do with it... DUH... despite the fact that we told them 100 times that I got one gene from <b>each parent</b>.

Some people just don't like to get a grip on it. Keep offering the truth. Maybe they'll accept it, maybe not. Hope for the best, but there are lots of families we've heard of that are just stupid and not in the least bit supportive. There's not much you can do for ignorant stubborn people that are hellbent on being ignorant.
 
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Emily65Roses

New member
As for your children being so different... there are cases of identical twins (therefore, same exact genes) having very different cases of CF. It's just how it works, it's such a varying disease.

As for your family, it's not "normal" but it does seem to happen a lot. For a long time my paternal grandparents blamed my mother for my CF, saying my father had nothing to do with it... DUH... despite the fact that we told them 100 times that I got one gene from <b>each parent</b>.

Some people just don't like to get a grip on it. Keep offering the truth. Maybe they'll accept it, maybe not. Hope for the best, but there are lots of families we've heard of that are just stupid and not in the least bit supportive. There's not much you can do for ignorant stubborn people that are hellbent on being ignorant.
 
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Emily65Roses

New member
As for your children being so different... there are cases of identical twins (therefore, same exact genes) having very different cases of CF. It's just how it works, it's such a varying disease.

As for your family, it's not "normal" but it does seem to happen a lot. For a long time my paternal grandparents blamed my mother for my CF, saying my father had nothing to do with it... DUH... despite the fact that we told them 100 times that I got one gene from <b>each parent</b>.

Some people just don't like to get a grip on it. Keep offering the truth. Maybe they'll accept it, maybe not. Hope for the best, but there are lots of families we've heard of that are just stupid and not in the least bit supportive. There's not much you can do for ignorant stubborn people that are hellbent on being ignorant.
 
E

Emily65Roses

New member
As for your children being so different... there are cases of identical twins (therefore, same exact genes) having very different cases of CF. It's just how it works, it's such a varying disease.

As for your family, it's not "normal" but it does seem to happen a lot. For a long time my paternal grandparents blamed my mother for my CF, saying my father had nothing to do with it... DUH... despite the fact that we told them 100 times that I got one gene from <b>each parent</b>.

Some people just don't like to get a grip on it. Keep offering the truth. Maybe they'll accept it, maybe not. Hope for the best, but there are lots of families we've heard of that are just stupid and not in the least bit supportive. There's not much you can do for ignorant stubborn people that are hellbent on being ignorant.
 
E

Emily65Roses

New member
As for your children being so different... there are cases of identical twins (therefore, same exact genes) having very different cases of CF. It's just how it works, it's such a varying disease.

As for your family, it's not "normal" but it does seem to happen a lot. For a long time my paternal grandparents blamed my mother for my CF, saying my father had nothing to do with it... DUH... despite the fact that we told them 100 times that I got one gene from <b>each parent</b>.

Some people just don't like to get a grip on it. Keep offering the truth. Maybe they'll accept it, maybe not. Hope for the best, but there are lots of families we've heard of that are just stupid and not in the least bit supportive. There's not much you can do for ignorant stubborn people that are hellbent on being ignorant.
 
E

Emily65Roses

New member
As for your children being so different... there are cases of identical twins (therefore, same exact genes) having very different cases of CF. It's just how it works, it's such a varying disease.

As for your family, it's not "normal" but it does seem to happen a lot. For a long time my paternal grandparents blamed my mother for my CF, saying my father had nothing to do with it... DUH... despite the fact that we told them 100 times that I got one gene from <b>each parent</b>.

Some people just don't like to get a grip on it. Keep offering the truth. Maybe they'll accept it, maybe not. Hope for the best, but there are lots of families we've heard of that are just stupid and not in the least bit supportive. There's not much you can do for ignorant stubborn people that are hellbent on being ignorant.
 
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cherishthree

New member
Tammy,
You have three children with CF? Wow God Bless You! I would love to chat with you some time I thought two would be to much. We where there for a little while when our oldest was hospitilized for a pretty bad Asthma attack again but she is not even a carrier !! We just got her test back from Ambry nothing thank God but she does have pretty bad Asthma when sick. Kathy
 
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cherishthree

New member
Tammy,
You have three children with CF? Wow God Bless You! I would love to chat with you some time I thought two would be to much. We where there for a little while when our oldest was hospitilized for a pretty bad Asthma attack again but she is not even a carrier !! We just got her test back from Ambry nothing thank God but she does have pretty bad Asthma when sick. Kathy
 
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cherishthree

New member
Tammy,
You have three children with CF? Wow God Bless You! I would love to chat with you some time I thought two would be to much. We where there for a little while when our oldest was hospitilized for a pretty bad Asthma attack again but she is not even a carrier !! We just got her test back from Ambry nothing thank God but she does have pretty bad Asthma when sick. Kathy
 
C

cherishthree

New member
Tammy,
You have three children with CF? Wow God Bless You! I would love to chat with you some time I thought two would be to much. We where there for a little while when our oldest was hospitilized for a pretty bad Asthma attack again but she is not even a carrier !! We just got her test back from Ambry nothing thank God but she does have pretty bad Asthma when sick. Kathy
 
C

cherishthree

New member
Tammy,
You have three children with CF? Wow God Bless You! I would love to chat with you some time I thought two would be to much. We where there for a little while when our oldest was hospitilized for a pretty bad Asthma attack again but she is not even a carrier !! We just got her test back from Ambry nothing thank God but she does have pretty bad Asthma when sick. Kathy
 
C

cherishthree

New member
Tammy,
You have three children with CF? Wow God Bless You! I would love to chat with you some time I thought two would be to much. We where there for a little while when our oldest was hospitilized for a pretty bad Asthma attack again but she is not even a carrier !! We just got her test back from Ambry nothing thank God but she does have pretty bad Asthma when sick. Kathy
 
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tammykrumrey

Guest
That stinks that your family isn't being supportive of your childrens new dx. I am sure that they just don't understand what having CF means. Could you bring one of your parents or possibly a sibling to a CF clinic appt with you and the kids so they can see for themselves what is involved?

When my first daughter was dx, my in-laws (mom, dad and sister) all came with us to Kayla's first CF clinic appt. I am sure that my mom was probably there, I just don't remember (since my nephew was dx with CF 8 years earlier, my side of the family pretty much knew the basics, so it wasn't as important for them to attend). But it really helped my husbands family, who knew a little about CF because of my nephew.

When my girls were little, and if my husband couldn't make it to an appt, either my mom or my mother in law would come with me. It was a handful to have two little ones at clinic by myself, asking questions, writing notes, etc. I know your kids aren't little ones, but maybe you could invite one of the parents to come with you, at least for a while, until they get a better understand of the world of CF.
 
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tammykrumrey

Guest
That stinks that your family isn't being supportive of your childrens new dx. I am sure that they just don't understand what having CF means. Could you bring one of your parents or possibly a sibling to a CF clinic appt with you and the kids so they can see for themselves what is involved?

When my first daughter was dx, my in-laws (mom, dad and sister) all came with us to Kayla's first CF clinic appt. I am sure that my mom was probably there, I just don't remember (since my nephew was dx with CF 8 years earlier, my side of the family pretty much knew the basics, so it wasn't as important for them to attend). But it really helped my husbands family, who knew a little about CF because of my nephew.

When my girls were little, and if my husband couldn't make it to an appt, either my mom or my mother in law would come with me. It was a handful to have two little ones at clinic by myself, asking questions, writing notes, etc. I know your kids aren't little ones, but maybe you could invite one of the parents to come with you, at least for a while, until they get a better understand of the world of CF.
 
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tammykrumrey

Guest
That stinks that your family isn't being supportive of your childrens new dx. I am sure that they just don't understand what having CF means. Could you bring one of your parents or possibly a sibling to a CF clinic appt with you and the kids so they can see for themselves what is involved?

When my first daughter was dx, my in-laws (mom, dad and sister) all came with us to Kayla's first CF clinic appt. I am sure that my mom was probably there, I just don't remember (since my nephew was dx with CF 8 years earlier, my side of the family pretty much knew the basics, so it wasn't as important for them to attend). But it really helped my husbands family, who knew a little about CF because of my nephew.

When my girls were little, and if my husband couldn't make it to an appt, either my mom or my mother in law would come with me. It was a handful to have two little ones at clinic by myself, asking questions, writing notes, etc. I know your kids aren't little ones, but maybe you could invite one of the parents to come with you, at least for a while, until they get a better understand of the world of CF.
 
T

tammykrumrey

Guest
That stinks that your family isn't being supportive of your childrens new dx. I am sure that they just don't understand what having CF means. Could you bring one of your parents or possibly a sibling to a CF clinic appt with you and the kids so they can see for themselves what is involved?

When my first daughter was dx, my in-laws (mom, dad and sister) all came with us to Kayla's first CF clinic appt. I am sure that my mom was probably there, I just don't remember (since my nephew was dx with CF 8 years earlier, my side of the family pretty much knew the basics, so it wasn't as important for them to attend). But it really helped my husbands family, who knew a little about CF because of my nephew.

When my girls were little, and if my husband couldn't make it to an appt, either my mom or my mother in law would come with me. It was a handful to have two little ones at clinic by myself, asking questions, writing notes, etc. I know your kids aren't little ones, but maybe you could invite one of the parents to come with you, at least for a while, until they get a better understand of the world of CF.
 
T

tammykrumrey

Guest
That stinks that your family isn't being supportive of your childrens new dx. I am sure that they just don't understand what having CF means. Could you bring one of your parents or possibly a sibling to a CF clinic appt with you and the kids so they can see for themselves what is involved?

When my first daughter was dx, my in-laws (mom, dad and sister) all came with us to Kayla's first CF clinic appt. I am sure that my mom was probably there, I just don't remember (since my nephew was dx with CF 8 years earlier, my side of the family pretty much knew the basics, so it wasn't as important for them to attend). But it really helped my husbands family, who knew a little about CF because of my nephew.

When my girls were little, and if my husband couldn't make it to an appt, either my mom or my mother in law would come with me. It was a handful to have two little ones at clinic by myself, asking questions, writing notes, etc. I know your kids aren't little ones, but maybe you could invite one of the parents to come with you, at least for a while, until they get a better understand of the world of CF.
 
T

tammykrumrey

Guest
That stinks that your family isn't being supportive of your childrens new dx. I am sure that they just don't understand what having CF means. Could you bring one of your parents or possibly a sibling to a CF clinic appt with you and the kids so they can see for themselves what is involved?

When my first daughter was dx, my in-laws (mom, dad and sister) all came with us to Kayla's first CF clinic appt. I am sure that my mom was probably there, I just don't remember (since my nephew was dx with CF 8 years earlier, my side of the family pretty much knew the basics, so it wasn't as important for them to attend). But it really helped my husbands family, who knew a little about CF because of my nephew.

When my girls were little, and if my husband couldn't make it to an appt, either my mom or my mother in law would come with me. It was a handful to have two little ones at clinic by myself, asking questions, writing notes, etc. I know your kids aren't little ones, but maybe you could invite one of the parents to come with you, at least for a while, until they get a better understand of the world of CF.
 
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