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out of the hospital

M

MargoB

New member
Hello,

Well Aspen is out of the hospital. Yeah they adjusted his meds hopefully that will work. Just want to encourage everyone to use this forum. Does anyone know if there are support groups for this and have they gone to them. I think there is on the main cf organization. I want to start going. I feel I know so little about all of this and it is such a medicine playing situation adjust this add this etc. I pray that all of you out there have support systems. I hope to move to be near my son and family just can not do it fast enough. I need job place to live etc. My son is getting so worn out and he does not live with them now as he had to get work outside the area.

Thanks for letting me share. Wishing you all health and happiness.

Love,

MargoB
 
M

MargoB

New member
Hello,

Well Aspen is out of the hospital. Yeah they adjusted his meds hopefully that will work. Just want to encourage everyone to use this forum. Does anyone know if there are support groups for this and have they gone to them. I think there is on the main cf organization. I want to start going. I feel I know so little about all of this and it is such a medicine playing situation adjust this add this etc. I pray that all of you out there have support systems. I hope to move to be near my son and family just can not do it fast enough. I need job place to live etc. My son is getting so worn out and he does not live with them now as he had to get work outside the area.

Thanks for letting me share. Wishing you all health and happiness.

Love,

MargoB
 
S

skh

Guest
Margo that is GREAT news! I don't have a support group that I attend - I guess I kind of think of this forum as my support. Just being able to read the different posts and knowing there is someone here if I need it has helped me. I wish you well on your move. Keep us posted as to Aspen's continued improvement.

Sue
 
S

skh

Guest
Margo that is GREAT news! I don't have a support group that I attend - I guess I kind of think of this forum as my support. Just being able to read the different posts and knowing there is someone here if I need it has helped me. I wish you well on your move. Keep us posted as to Aspen's continued improvement.

Sue
 
A

anonymous

New member
ask your CF care clinic if they have any parent support groups in the area or call the CF Foundation, there was none in our area so me and my Husband started one and asked the CF Nurse to spread the news and it has been a great support and uplift to all who attends!!! I hope Aspen is feeling even better now....
 
A

anonymous

New member
ask your CF care clinic if they have any parent support groups in the area or call the CF Foundation, there was none in our area so me and my Husband started one and asked the CF Nurse to spread the news and it has been a great support and uplift to all who attends!!! I hope Aspen is feeling even better now....
 
A

anonymous

New member
There's one in our area every quarter that's sponsored by the CF Association of ND, which isn't affiliated with CFF. We get flyers, but so far none of the topics have appealed to me or pertain to our child's situation. I've heard from other couples that it's just a waste of time 'cuz all they do is complain about the U of MN clinic and talk about fundraising. There is a parents support group out of the twin cities and they have their own online support group, too on yahoo called CF community.
 
A

anonymous

New member
There's one in our area every quarter that's sponsored by the CF Association of ND, which isn't affiliated with CFF. We get flyers, but so far none of the topics have appealed to me or pertain to our child's situation. I've heard from other couples that it's just a waste of time 'cuz all they do is complain about the U of MN clinic and talk about fundraising. There is a parents support group out of the twin cities and they have their own online support group, too on yahoo called CF community.
 
S

skh

Guest
Hi anonymous, you mentioned ND so I'm assuming you are from there? We live in Mandan, ND. We are members of the Cystic Fibrosis Association of ND. My husband and I aren't very active since we both work and their meetings take place during the work day. It's hard to participate that way. I can't say that I have heard anything negative regarding the U of MN and my daughter does go there once a year for a visit. One of the advantages to belonging to the CFA of ND is that they will help with medication costs. Have you checked into that? I volunteer each year to help with the "thank you's" that are sent out for the Mother's Day Tea Fundraiser. This is something I can do on the evenings and weekends.

I am very interested in the CFF and they do have an office in the cities. They are hosting a wine tasting fund raiser in early April. Have you heard anything on this? They did this last year and I was unable to make it - I am going to try to get there this time.

Sue
 
S

skh

Guest
Hi anonymous, you mentioned ND so I'm assuming you are from there? We live in Mandan, ND. We are members of the Cystic Fibrosis Association of ND. My husband and I aren't very active since we both work and their meetings take place during the work day. It's hard to participate that way. I can't say that I have heard anything negative regarding the U of MN and my daughter does go there once a year for a visit. One of the advantages to belonging to the CFA of ND is that they will help with medication costs. Have you checked into that? I volunteer each year to help with the "thank you's" that are sent out for the Mother's Day Tea Fundraiser. This is something I can do on the evenings and weekends.

I am very interested in the CFF and they do have an office in the cities. They are hosting a wine tasting fund raiser in early April. Have you heard anything on this? They did this last year and I was unable to make it - I am going to try to get there this time.

Sue
 
A

anonymous

New member
Haven't attended any of the CFF stuff in Minneapolis, but have taken part in some of the Great Strides Walks. Heard there's one in Nevis, MN in the summer that's kinda cool. The townspeople just decided to take it upon themselves to have their own walk. Fargo has a CF walk in May, Duluth has one in September.

The comments about the CF Association were posted on healthboards a year or so ago -- someone from Minnesota, who goes to the Fargo Clinic made a comment. They have a support group in Fargo on Thursday evenings -- haven't attended 'cuz there's either something going on or topics haven't appealed/pertained to us as of yet. One was CF related diabetes, another time it was a going away reception...
 
A

anonymous

New member
Haven't attended any of the CFF stuff in Minneapolis, but have taken part in some of the Great Strides Walks. Heard there's one in Nevis, MN in the summer that's kinda cool. The townspeople just decided to take it upon themselves to have their own walk. Fargo has a CF walk in May, Duluth has one in September.

The comments about the CF Association were posted on healthboards a year or so ago -- someone from Minnesota, who goes to the Fargo Clinic made a comment. They have a support group in Fargo on Thursday evenings -- haven't attended 'cuz there's either something going on or topics haven't appealed/pertained to us as of yet. One was CF related diabetes, another time it was a going away reception...
 
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