I need your help

[MEgal]

Hi-

I am a CF/Lung transplant patient and I have never attended a support group affiliated with any center. I heard in some instances these meetings between CF patients are discouraged these days.

ALso, not really been involved with much online support either. How do you all feel about sites like these- are they beneficial to you or do you feel more of a disconnect or more fustrated because their is that lack of face to face connection? Just wondering your thoughts on the advantages/ disadavantages of spaces like these.

I would really like to know what you have to say-- especially since it may be harder for people with CF to get together b/c of bacterial contagion etc in contrast to individuals with other illnesses who do not have this complication... Thanks.

 

[MEgal]

Hi-

I am a CF/Lung transplant patient and I have never attended a support group affiliated with any center. I heard in some instances these meetings between CF patients are discouraged these days.

ALso, not really been involved with much online support either. How do you all feel about sites like these- are they beneficial to you or do you feel more of a disconnect or more fustrated because their is that lack of face to face connection? Just wondering your thoughts on the advantages/ disadavantages of spaces like these.

I would really like to know what you have to say-- especially since it may be harder for people with CF to get together b/c of bacterial contagion etc in contrast to individuals with other illnesses who do not have this complication... Thanks.

 

[MEgal]

Hi-

I am a CF/Lung transplant patient and I have never attended a support group affiliated with any center. I heard in some instances these meetings between CF patients are discouraged these days.

ALso, not really been involved with much online support either. How do you all feel about sites like these- are they beneficial to you or do you feel more of a disconnect or more fustrated because their is that lack of face to face connection? Just wondering your thoughts on the advantages/ disadavantages of spaces like these.

I would really like to know what you have to say-- especially since it may be harder for people with CF to get together b/c of bacterial contagion etc in contrast to individuals with other illnesses who do not have this complication... Thanks.

 

[sarabeth87]

I really enjoy this site because most people on here know what you are going thru and can relate. I think they've answered just about every question I've had in fact. I know that face to fact meetings with CFers is discouraged because of spreading germs, so I feel that online support groups such as this one are very helpful. I know that I've learned sooooo much since I found this site and joined.

 

[sarabeth87]

I really enjoy this site because most people on here know what you are going thru and can relate. I think they've answered just about every question I've had in fact. I know that face to fact meetings with CFers is discouraged because of spreading germs, so I feel that online support groups such as this one are very helpful. I know that I've learned sooooo much since I found this site and joined.

 

[sarabeth87]

I really enjoy this site because most people on here know what you are going thru and can relate. I think they've answered just about every question I've had in fact. I know that face to fact meetings with CFers is discouraged because of spreading germs, so I feel that online support groups such as this one are very helpful. I know that I've learned sooooo much since I found this site and joined.

 

[JazzysMom]

There are pros/cons to any online site as my doctor likes to point out. I use to think there was no need for me to converse with other CFers....I mean I thought I was "like them". Then when I got really sick in 2000 I realized that no one truly understood what I was dealing with so I joined. Well here I am almost 7 years later with many people that are an extended family & tons more support & information. Just remember that its like any online site....you are dealing with the world wide web so anything could happen on sites!


BTW I dont think you truly realize how its a benefit until something you are going thru someone else can almost read your mind because you have had the same thoughts!

 

[JazzysMom]

There are pros/cons to any online site as my doctor likes to point out. I use to think there was no need for me to converse with other CFers....I mean I thought I was "like them". Then when I got really sick in 2000 I realized that no one truly understood what I was dealing with so I joined. Well here I am almost 7 years later with many people that are an extended family & tons more support & information. Just remember that its like any online site....you are dealing with the world wide web so anything could happen on sites!


BTW I dont think you truly realize how its a benefit until something you are going thru someone else can almost read your mind because you have had the same thoughts!

 

[JazzysMom]

There are pros/cons to any online site as my doctor likes to point out. I use to think there was no need for me to converse with other CFers....I mean I thought I was "like them". Then when I got really sick in 2000 I realized that no one truly understood what I was dealing with so I joined. Well here I am almost 7 years later with many people that are an extended family & tons more support & information. Just remember that its like any online site....you are dealing with the world wide web so anything could happen on sites!


BTW I dont think you truly realize how its a benefit until something you are going thru someone else can almost read your mind because you have had the same thoughts!

 

[westonsmom]

I just joined last week and have really found it helpful to talk to other individuals with CF and also parents of children with CF like myself. I have not attended any other support groups. I have been told that our CF clinic may be starting one for parents, but I don't know when or if. The good thing about this site is that I don't only get other parents experiences but I also get to hear what it is like for people who actually have CF and what has helped them.
Hope that helps. God bless you for being a lung donor.
Jenn
wife, and mother of Ella and Weston.

 

[westonsmom]

I just joined last week and have really found it helpful to talk to other individuals with CF and also parents of children with CF like myself. I have not attended any other support groups. I have been told that our CF clinic may be starting one for parents, but I don't know when or if. The good thing about this site is that I don't only get other parents experiences but I also get to hear what it is like for people who actually have CF and what has helped them.
Hope that helps. God bless you for being a lung donor.
Jenn
wife, and mother of Ella and Weston.

 

[westonsmom]

I just joined last week and have really found it helpful to talk to other individuals with CF and also parents of children with CF like myself. I have not attended any other support groups. I have been told that our CF clinic may be starting one for parents, but I don't know when or if. The good thing about this site is that I don't only get other parents experiences but I also get to hear what it is like for people who actually have CF and what has helped them.
Hope that helps. God bless you for being a lung donor.
Jenn
wife, and mother of Ella and Weston.