Opinions on CF Centers in Ohio

M

mom2my3kids

New member
Ok CF family,

Baby Xander went to Dayton Children's Hospital for his CF care prior to his death. Some of you know my distaste of his CF doctor from chats with me. Now Dakota diagnosis prompts us to decide to 1) return to Dayton for care (not under same doc because I won't have that) or 2) Try Columbus who seems resistant to my knowledge regarding the variants and type my kids have. I know I already lost one child and I REFUSE to watch another die from this disease without doing everything I can (not that I didn't for Xander for what I knew then...he taught me alot) I would like some opinions?

Thanks
 
M

mom2my3kids

New member
Ok CF family,

Baby Xander went to Dayton Children's Hospital for his CF care prior to his death. Some of you know my distaste of his CF doctor from chats with me. Now Dakota diagnosis prompts us to decide to 1) return to Dayton for care (not under same doc because I won't have that) or 2) Try Columbus who seems resistant to my knowledge regarding the variants and type my kids have. I know I already lost one child and I REFUSE to watch another die from this disease without doing everything I can (not that I didn't for Xander for what I knew then...he taught me alot) I would like some opinions?

Thanks
 
M

mom2my3kids

New member
Ok CF family,
<br />
<br />Baby Xander went to Dayton Children's Hospital for his CF care prior to his death. Some of you know my distaste of his CF doctor from chats with me. Now Dakota diagnosis prompts us to decide to 1) return to Dayton for care (not under same doc because I won't have that) or 2) Try Columbus who seems resistant to my knowledge regarding the variants and type my kids have. I know I already lost one child and I REFUSE to watch another die from this disease without doing everything I can (not that I didn't for Xander for what I knew then...he taught me alot) I would like some opinions?
<br />
<br />Thanks
 
M

mag6125

New member
I don't have personal experience with Columbus but I have heard good things. I go to Akron childrens and my docs referred me to columbus when I went to osu
 
M

mag6125

New member
I don't have personal experience with Columbus but I have heard good things. I go to Akron childrens and my docs referred me to columbus when I went to osu
 
M

mag6125

New member
I don't have personal experience with Columbus but I have heard good things. I go to Akron childrens and my docs referred me to columbus when I went to osu
 
M

Mommafirst

Guest
I've also heard good things about Columbus, Jana. You might want to consider Cincinatti as well -- I've heard they have an excellent center. Being in OH, we are very lucky to have so many centers to choose from. There is one in Toledo as well, but that is probably too far for you.

I'm so sorry that this is so hard for you -- and I don't blame you at all for wanting to switch centers.
 
M

Mommafirst

Guest
I've also heard good things about Columbus, Jana. You might want to consider Cincinatti as well -- I've heard they have an excellent center. Being in OH, we are very lucky to have so many centers to choose from. There is one in Toledo as well, but that is probably too far for you.

I'm so sorry that this is so hard for you -- and I don't blame you at all for wanting to switch centers.
 
M

Mommafirst

Guest
I've also heard good things about Columbus, Jana. You might want to consider Cincinatti as well -- I've heard they have an excellent center. Being in OH, we are very lucky to have so many centers to choose from. There is one in Toledo as well, but that is probably too far for you.
<br />
<br />I'm so sorry that this is so hard for you -- and I don't blame you at all for wanting to switch centers.
 
T

TonyaH

Guest
Jana,
Let me start by saying my heart goes out to you and your family.

I used to work for the CF Foundation in the Metro Detroit Chapter. I did alot of work with the Toledo team at Toledo Children's Hospital. They were fantastic. Had we not lived so far north of Detroit I would have moved Andrew there.

If Toledo is not out of the question as far as drive time, make a call. Kim Reno is the social worker there. Treating and improving the lives of those with CF is not just her job, but her passion. The amount of personal time she spends helping her patients, running fundraisers, etc. etc. is amazing. I know she would take the time to answer any questions you have.

Good luck as you find a new carecenter home. The right fit is so important.
 
T

TonyaH

Guest
Jana,
Let me start by saying my heart goes out to you and your family.

I used to work for the CF Foundation in the Metro Detroit Chapter. I did alot of work with the Toledo team at Toledo Children's Hospital. They were fantastic. Had we not lived so far north of Detroit I would have moved Andrew there.

If Toledo is not out of the question as far as drive time, make a call. Kim Reno is the social worker there. Treating and improving the lives of those with CF is not just her job, but her passion. The amount of personal time she spends helping her patients, running fundraisers, etc. etc. is amazing. I know she would take the time to answer any questions you have.

Good luck as you find a new carecenter home. The right fit is so important.
 
T

TonyaH

Guest
Jana,
<br />Let me start by saying my heart goes out to you and your family.
<br />
<br />I used to work for the CF Foundation in the Metro Detroit Chapter. I did alot of work with the Toledo team at Toledo Children's Hospital. They were fantastic. Had we not lived so far north of Detroit I would have moved Andrew there.
<br />
<br />If Toledo is not out of the question as far as drive time, make a call. Kim Reno is the social worker there. Treating and improving the lives of those with CF is not just her job, but her passion. The amount of personal time she spends helping her patients, running fundraisers, etc. etc. is amazing. I know she would take the time to answer any questions you have.
<br />
<br />Good luck as you find a new carecenter home. The right fit is so important.
 
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