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CF ISOLATION
- Thread starter albino15
- Start date
Lance2020x
New member
Agreed. I met someone with CF for the first time (aside from my brother) at my last appointment, it was really neat to meet her, and I still keep in contact, but the whole time we were talking we stood about 5 feet apart, it was really sad.
Lance2020x
New member
Agreed. I met someone with CF for the first time (aside from my brother) at my last appointment, it was really neat to meet her, and I still keep in contact, but the whole time we were talking we stood about 5 feet apart, it was really sad.
Lance2020x
New member
Agreed. I met someone with CF for the first time (aside from my brother) at my last appointment, it was really neat to meet her, and I still keep in contact, but the whole time we were talking we stood about 5 feet apart, it was really sad.
Lance2020x
New member
Agreed. I met someone with CF for the first time (aside from my brother) at my last appointment, it was really neat to meet her, and I still keep in contact, but the whole time we were talking we stood about 5 feet apart, it was really sad.
Lance2020x
New member
Agreed. I met someone with CF for the first time (aside from my brother) at my last appointment, it was really neat to meet her, and I still keep in contact, but the whole time we were talking we stood about 5 feet apart, it was really sad.
J
Jan
Guest
Yes I think it is a real shame that people with CF need to be so careful in case of cross infection. I am the Mum to a 21 year old daughter (beaautiful one at that!) who has CF. When she was a baby and young child there were no such concerns and she had day excursions, camps and as an inpatient had fun with other kids. If they clicked it was great for the kids to have someone to chat, laugh, share, support and know what it is like to have to go thru things like missing school and being nervous at having to return as a bit of an outsider having missed the goings on. THEN the rules changed only to protect all kids with CF BUT it was sad to see kids who shared a bond be so isolated. I used to think...she doesn't need other kids with CF but I attended a funeral service with my daughter for a young boy with CF who my daughter knew from lots of hospital stays. I saw there the bond lots of kids with CF share and it is very special. I watched them comfort each other and realised that I can't know/feel the bond they have. Not just kids with CF..others with different med conditions who spend alot of time with them in hospital too.I met a 34 year old women last week with CF who said she loved her times with other people with CF and it was from them she learnt the most important things regarding CF from them. My daughter is very careful but if it wasn't an issue there are a few kids in different circumstances who we could have spend time with our family, take them out when they in hospital and struggling particularly the country kids who don't have family BUT we can't and that stinks. I think it is human nature to seek others out when we share things in common. I notice when my daughter is unwell or hears of others who are...they reach out to each other and it is such a shame they can't offer a hug.
I know the support I get from other parents and it is upsetting that it is just another issue for people with CF to deal with.
xxxx
I know the support I get from other parents and it is upsetting that it is just another issue for people with CF to deal with.
xxxx
J
Jan
Guest
Yes I think it is a real shame that people with CF need to be so careful in case of cross infection. I am the Mum to a 21 year old daughter (beaautiful one at that!) who has CF. When she was a baby and young child there were no such concerns and she had day excursions, camps and as an inpatient had fun with other kids. If they clicked it was great for the kids to have someone to chat, laugh, share, support and know what it is like to have to go thru things like missing school and being nervous at having to return as a bit of an outsider having missed the goings on. THEN the rules changed only to protect all kids with CF BUT it was sad to see kids who shared a bond be so isolated. I used to think...she doesn't need other kids with CF but I attended a funeral service with my daughter for a young boy with CF who my daughter knew from lots of hospital stays. I saw there the bond lots of kids with CF share and it is very special. I watched them comfort each other and realised that I can't know/feel the bond they have. Not just kids with CF..others with different med conditions who spend alot of time with them in hospital too.I met a 34 year old women last week with CF who said she loved her times with other people with CF and it was from them she learnt the most important things regarding CF from them. My daughter is very careful but if it wasn't an issue there are a few kids in different circumstances who we could have spend time with our family, take them out when they in hospital and struggling particularly the country kids who don't have family BUT we can't and that stinks. I think it is human nature to seek others out when we share things in common. I notice when my daughter is unwell or hears of others who are...they reach out to each other and it is such a shame they can't offer a hug.
I know the support I get from other parents and it is upsetting that it is just another issue for people with CF to deal with.
xxxx
I know the support I get from other parents and it is upsetting that it is just another issue for people with CF to deal with.
xxxx
J
Jan
Guest
Yes I think it is a real shame that people with CF need to be so careful in case of cross infection. I am the Mum to a 21 year old daughter (beaautiful one at that!) who has CF. When she was a baby and young child there were no such concerns and she had day excursions, camps and as an inpatient had fun with other kids. If they clicked it was great for the kids to have someone to chat, laugh, share, support and know what it is like to have to go thru things like missing school and being nervous at having to return as a bit of an outsider having missed the goings on. THEN the rules changed only to protect all kids with CF BUT it was sad to see kids who shared a bond be so isolated. I used to think...she doesn't need other kids with CF but I attended a funeral service with my daughter for a young boy with CF who my daughter knew from lots of hospital stays. I saw there the bond lots of kids with CF share and it is very special. I watched them comfort each other and realised that I can't know/feel the bond they have. Not just kids with CF..others with different med conditions who spend alot of time with them in hospital too.I met a 34 year old women last week with CF who said she loved her times with other people with CF and it was from them she learnt the most important things regarding CF from them. My daughter is very careful but if it wasn't an issue there are a few kids in different circumstances who we could have spend time with our family, take them out when they in hospital and struggling particularly the country kids who don't have family BUT we can't and that stinks. I think it is human nature to seek others out when we share things in common. I notice when my daughter is unwell or hears of others who are...they reach out to each other and it is such a shame they can't offer a hug.
I know the support I get from other parents and it is upsetting that it is just another issue for people with CF to deal with.
xxxx
I know the support I get from other parents and it is upsetting that it is just another issue for people with CF to deal with.
xxxx
J
Jan
Guest
Yes I think it is a real shame that people with CF need to be so careful in case of cross infection. I am the Mum to a 21 year old daughter (beaautiful one at that!) who has CF. When she was a baby and young child there were no such concerns and she had day excursions, camps and as an inpatient had fun with other kids. If they clicked it was great for the kids to have someone to chat, laugh, share, support and know what it is like to have to go thru things like missing school and being nervous at having to return as a bit of an outsider having missed the goings on. THEN the rules changed only to protect all kids with CF BUT it was sad to see kids who shared a bond be so isolated. I used to think...she doesn't need other kids with CF but I attended a funeral service with my daughter for a young boy with CF who my daughter knew from lots of hospital stays. I saw there the bond lots of kids with CF share and it is very special. I watched them comfort each other and realised that I can't know/feel the bond they have. Not just kids with CF..others with different med conditions who spend alot of time with them in hospital too.I met a 34 year old women last week with CF who said she loved her times with other people with CF and it was from them she learnt the most important things regarding CF from them. My daughter is very careful but if it wasn't an issue there are a few kids in different circumstances who we could have spend time with our family, take them out when they in hospital and struggling particularly the country kids who don't have family BUT we can't and that stinks. I think it is human nature to seek others out when we share things in common. I notice when my daughter is unwell or hears of others who are...they reach out to each other and it is such a shame they can't offer a hug.
I know the support I get from other parents and it is upsetting that it is just another issue for people with CF to deal with.
xxxx
I know the support I get from other parents and it is upsetting that it is just another issue for people with CF to deal with.
xxxx
J
Jan
Guest
Yes I think it is a real shame that people with CF need to be so careful in case of cross infection. I am the Mum to a 21 year old daughter (beaautiful one at that!) who has CF. When she was a baby and young child there were no such concerns and she had day excursions, camps and as an inpatient had fun with other kids. If they clicked it was great for the kids to have someone to chat, laugh, share, support and know what it is like to have to go thru things like missing school and being nervous at having to return as a bit of an outsider having missed the goings on. THEN the rules changed only to protect all kids with CF BUT it was sad to see kids who shared a bond be so isolated. I used to think...she doesn't need other kids with CF but I attended a funeral service with my daughter for a young boy with CF who my daughter knew from lots of hospital stays. I saw there the bond lots of kids with CF share and it is very special. I watched them comfort each other and realised that I can't know/feel the bond they have. Not just kids with CF..others with different med conditions who spend alot of time with them in hospital too.I met a 34 year old women last week with CF who said she loved her times with other people with CF and it was from them she learnt the most important things regarding CF from them. My daughter is very careful but if it wasn't an issue there are a few kids in different circumstances who we could have spend time with our family, take them out when they in hospital and struggling particularly the country kids who don't have family BUT we can't and that stinks. I think it is human nature to seek others out when we share things in common. I notice when my daughter is unwell or hears of others who are...they reach out to each other and it is such a shame they can't offer a hug.
I know the support I get from other parents and it is upsetting that it is just another issue for people with CF to deal with.
xxxx
I know the support I get from other parents and it is upsetting that it is just another issue for people with CF to deal with.
xxxx
mellybean17
New member
honestly. I don't really care.
Ive hung out with a couple CF people, and nothing happened, my Dr says not to ever visit them in the hospital though.
Ive hung out with a couple CF people, and nothing happened, my Dr says not to ever visit them in the hospital though.
mellybean17
New member
honestly. I don't really care.
Ive hung out with a couple CF people, and nothing happened, my Dr says not to ever visit them in the hospital though.
Ive hung out with a couple CF people, and nothing happened, my Dr says not to ever visit them in the hospital though.
mellybean17
New member
honestly. I don't really care.
Ive hung out with a couple CF people, and nothing happened, my Dr says not to ever visit them in the hospital though.
Ive hung out with a couple CF people, and nothing happened, my Dr says not to ever visit them in the hospital though.
mellybean17
New member
honestly. I don't really care.
Ive hung out with a couple CF people, and nothing happened, my Dr says not to ever visit them in the hospital though.
Ive hung out with a couple CF people, and nothing happened, my Dr says not to ever visit them in the hospital though.
mellybean17
New member
honestly. I don't really care.
Ive hung out with a couple CF people, and nothing happened, my Dr says not to ever visit them in the hospital though.
Ive hung out with a couple CF people, and nothing happened, my Dr says not to ever visit them in the hospital though.