Moving to Hawaii

brewz2 · May 27, 2009

My husband is active duty..have enrolled in the Exception Family Member Program (EFMP)? I know there are certain places that we can't be stationed b/c of the kids CF status. While Hawaii is great, if you're not comfortable going there, it may be something you want to bring up to the detailer and address, if you haven't already.

Tracey, mommy to Sydney, 8 and Seth, 4 - both w/cf DDF508

brewz2 · May 27, 2009

My husband is active duty..have enrolled in the Exception Family Member Program (EFMP)? I know there are certain places that we can't be stationed b/c of the kids CF status. While Hawaii is great, if you're not comfortable going there, it may be something you want to bring up to the detailer and address, if you haven't already.

Tracey, mommy to Sydney, 8 and Seth, 4 - both w/cf DDF508

brewz2 · May 27, 2009

My husband is active duty..have enrolled in the Exception Family Member Program (EFMP)? I know there are certain places that we can't be stationed b/c of the kids CF status. While Hawaii is great, if you're not comfortable going there, it may be something you want to bring up to the detailer and address, if you haven't already.

Tracey, mommy to Sydney, 8 and Seth, 4 - both w/cf DDF508

brewz2 · May 27, 2009

My husband is active duty..have enrolled in the Exception Family Member Program (EFMP)? I know there are certain places that we can't be stationed b/c of the kids CF status. While Hawaii is great, if you're not comfortable going there, it may be something you want to bring up to the detailer and address, if you haven't already.

Tracey, mommy to Sydney, 8 and Seth, 4 - both w/cf DDF508

brewz2 · May 27, 2009

My husband is active duty..have enrolled in the Exception Family Member Program (EFMP)? I know there are certain places that we can't be stationed b/c of the kids CF status. While Hawaii is great, if you're not comfortable going there, it may be something you want to bring up to the detailer and address, if you haven't already.
 
 Tracey, mommy to Sydney, 8 and Seth, 4 - both w/cf DDF508

ReneeP · May 28, 2009

I have never been to Hawaii so I have no first hand information...however, during our last visit to our CF Center in San Antonio, my 14 year old daughter told her doctor that she planned to go to college in Hawaii. The CF doctor told her that there are no CF Centers in Hawaii and that she just had a family move from Hawaii to San Antonio because their daughter was diagnosed with CF and there was no where to get care in Hawaii. They were also a military family.

I have learned not to rely on the CFF.ORG website when it comes to finding a CF Center. Two years ago my husband was offered a job in Midland, TX. The first thing I did was look on that website to look for a CF Center. There was one listed in Midland which thrilled me. At the time we were driving 3 1/2 hours to our CF Center. So, my husband accepted the job and we started the moving process. Only then when I called the CF Center for info did I find out there was no CF Center in Midland.

We had to make the move because my husband had already accepted the job and gave notice at his other job that he was leaving. I called the Cystic Fibrosis Foundation to advise that the "CF Center" in Midland did not exist and that they need to remove that info from their website. They directed me to the local CFF office in Fort Worth. I called them and they said they could not remove it, it was up to the national CFF office to do so... 2 1/2 years later, that info is still listed on the CFF.ORG website. I just checked it right before starting this post...

Now we drive 6 hours to the closest CF Center. Luckily my girls are relatively healthy and we only have to go every 3 months. But we have had a few hospitalizations in the past 2 years and it is rough being 6 hours from home for 14 days straight... Especially considering I have 5 children. I don't see my other children the entire time... And although I love Midland and am very happy here other than the distance we have to drive for health care, I would not have made the move had it not been for the incorrect info on the CFF.ORG website.

It is great that you are doing your research in advance to be prepared... Good luck to you and your family!

ReneeP · May 28, 2009

I have never been to Hawaii so I have no first hand information...however, during our last visit to our CF Center in San Antonio, my 14 year old daughter told her doctor that she planned to go to college in Hawaii. The CF doctor told her that there are no CF Centers in Hawaii and that she just had a family move from Hawaii to San Antonio because their daughter was diagnosed with CF and there was no where to get care in Hawaii. They were also a military family.

I have learned not to rely on the CFF.ORG website when it comes to finding a CF Center. Two years ago my husband was offered a job in Midland, TX. The first thing I did was look on that website to look for a CF Center. There was one listed in Midland which thrilled me. At the time we were driving 3 1/2 hours to our CF Center. So, my husband accepted the job and we started the moving process. Only then when I called the CF Center for info did I find out there was no CF Center in Midland.

We had to make the move because my husband had already accepted the job and gave notice at his other job that he was leaving. I called the Cystic Fibrosis Foundation to advise that the "CF Center" in Midland did not exist and that they need to remove that info from their website. They directed me to the local CFF office in Fort Worth. I called them and they said they could not remove it, it was up to the national CFF office to do so... 2 1/2 years later, that info is still listed on the CFF.ORG website. I just checked it right before starting this post...

Now we drive 6 hours to the closest CF Center. Luckily my girls are relatively healthy and we only have to go every 3 months. But we have had a few hospitalizations in the past 2 years and it is rough being 6 hours from home for 14 days straight... Especially considering I have 5 children. I don't see my other children the entire time... And although I love Midland and am very happy here other than the distance we have to drive for health care, I would not have made the move had it not been for the incorrect info on the CFF.ORG website.

It is great that you are doing your research in advance to be prepared... Good luck to you and your family!

ReneeP · May 28, 2009

I have never been to Hawaii so I have no first hand information...however, during our last visit to our CF Center in San Antonio, my 14 year old daughter told her doctor that she planned to go to college in Hawaii. The CF doctor told her that there are no CF Centers in Hawaii and that she just had a family move from Hawaii to San Antonio because their daughter was diagnosed with CF and there was no where to get care in Hawaii. They were also a military family.

I have learned not to rely on the CFF.ORG website when it comes to finding a CF Center. Two years ago my husband was offered a job in Midland, TX. The first thing I did was look on that website to look for a CF Center. There was one listed in Midland which thrilled me. At the time we were driving 3 1/2 hours to our CF Center. So, my husband accepted the job and we started the moving process. Only then when I called the CF Center for info did I find out there was no CF Center in Midland.

We had to make the move because my husband had already accepted the job and gave notice at his other job that he was leaving. I called the Cystic Fibrosis Foundation to advise that the "CF Center" in Midland did not exist and that they need to remove that info from their website. They directed me to the local CFF office in Fort Worth. I called them and they said they could not remove it, it was up to the national CFF office to do so... 2 1/2 years later, that info is still listed on the CFF.ORG website. I just checked it right before starting this post...

Now we drive 6 hours to the closest CF Center. Luckily my girls are relatively healthy and we only have to go every 3 months. But we have had a few hospitalizations in the past 2 years and it is rough being 6 hours from home for 14 days straight... Especially considering I have 5 children. I don't see my other children the entire time... And although I love Midland and am very happy here other than the distance we have to drive for health care, I would not have made the move had it not been for the incorrect info on the CFF.ORG website.

It is great that you are doing your research in advance to be prepared... Good luck to you and your family!

ReneeP · May 28, 2009

I have never been to Hawaii so I have no first hand information...however, during our last visit to our CF Center in San Antonio, my 14 year old daughter told her doctor that she planned to go to college in Hawaii. The CF doctor told her that there are no CF Centers in Hawaii and that she just had a family move from Hawaii to San Antonio because their daughter was diagnosed with CF and there was no where to get care in Hawaii. They were also a military family.

I have learned not to rely on the CFF.ORG website when it comes to finding a CF Center. Two years ago my husband was offered a job in Midland, TX. The first thing I did was look on that website to look for a CF Center. There was one listed in Midland which thrilled me. At the time we were driving 3 1/2 hours to our CF Center. So, my husband accepted the job and we started the moving process. Only then when I called the CF Center for info did I find out there was no CF Center in Midland.

We had to make the move because my husband had already accepted the job and gave notice at his other job that he was leaving. I called the Cystic Fibrosis Foundation to advise that the "CF Center" in Midland did not exist and that they need to remove that info from their website. They directed me to the local CFF office in Fort Worth. I called them and they said they could not remove it, it was up to the national CFF office to do so... 2 1/2 years later, that info is still listed on the CFF.ORG website. I just checked it right before starting this post...

Now we drive 6 hours to the closest CF Center. Luckily my girls are relatively healthy and we only have to go every 3 months. But we have had a few hospitalizations in the past 2 years and it is rough being 6 hours from home for 14 days straight... Especially considering I have 5 children. I don't see my other children the entire time... And although I love Midland and am very happy here other than the distance we have to drive for health care, I would not have made the move had it not been for the incorrect info on the CFF.ORG website.

It is great that you are doing your research in advance to be prepared... Good luck to you and your family!

ReneeP · May 28, 2009

I have never been to Hawaii so I have no first hand information...however, during our last visit to our CF Center in San Antonio, my 14 year old daughter told her doctor that she planned to go to college in Hawaii. The CF doctor told her that there are no CF Centers in Hawaii and that she just had a family move from Hawaii to San Antonio because their daughter was diagnosed with CF and there was no where to get care in Hawaii. They were also a military family.
 
 I have learned not to rely on the CFF.ORG website when it comes to finding a CF Center. Two years ago my husband was offered a job in Midland, TX. The first thing I did was look on that website to look for a CF Center. There was one listed in Midland which thrilled me. At the time we were driving 3 1/2 hours to our CF Center. So, my husband accepted the job and we started the moving process. Only then when I called the CF Center for info did I find out there was no CF Center in Midland.
 
 We had to make the move because my husband had already accepted the job and gave notice at his other job that he was leaving. I called the Cystic Fibrosis Foundation to advise that the "CF Center" in Midland did not exist and that they need to remove that info from their website. They directed me to the local CFF office in Fort Worth. I called them and they said they could not remove it, it was up to the national CFF office to do so... 2 1/2 years later, that info is still listed on the CFF.ORG website. I just checked it right before starting this post...
 
 Now we drive 6 hours to the closest CF Center. Luckily my girls are relatively healthy and we only have to go every 3 months. But we have had a few hospitalizations in the past 2 years and it is rough being 6 hours from home for 14 days straight... Especially considering I have 5 children. I don't see my other children the entire time... And although I love Midland and am very happy here other than the distance we have to drive for health care, I would not have made the move had it not been for the incorrect info on the CFF.ORG website.
 
 It is great that you are doing your research in advance to be prepared... Good luck to you and your family!

Jeana · May 29, 2009

I did talk with my mother about the CF care at the hospital on Oahu. She says she only recalls one doc being inadequate during my life with her and that was an ENT doc in NY. Anyway, she couldn't really remember any specifics since it has been so long and we moved a lot in the military. Sorry I couldn't be of more help. I agree with Renee about calling the CF center. I would check to be sure that it wasn't just a pulmonologist but a CF team able to address all of the concerns of CF.

Jeana · May 29, 2009

I did talk with my mother about the CF care at the hospital on Oahu. She says she only recalls one doc being inadequate during my life with her and that was an ENT doc in NY. Anyway, she couldn't really remember any specifics since it has been so long and we moved a lot in the military. Sorry I couldn't be of more help. I agree with Renee about calling the CF center. I would check to be sure that it wasn't just a pulmonologist but a CF team able to address all of the concerns of CF.

Jeana · May 29, 2009

I did talk with my mother about the CF care at the hospital on Oahu. She says she only recalls one doc being inadequate during my life with her and that was an ENT doc in NY. Anyway, she couldn't really remember any specifics since it has been so long and we moved a lot in the military. Sorry I couldn't be of more help. I agree with Renee about calling the CF center. I would check to be sure that it wasn't just a pulmonologist but a CF team able to address all of the concerns of CF.

Jeana · May 29, 2009

I did talk with my mother about the CF care at the hospital on Oahu. She says she only recalls one doc being inadequate during my life with her and that was an ENT doc in NY. Anyway, she couldn't really remember any specifics since it has been so long and we moved a lot in the military. Sorry I couldn't be of more help. I agree with Renee about calling the CF center. I would check to be sure that it wasn't just a pulmonologist but a CF team able to address all of the concerns of CF.

Jeana · May 29, 2009

I did talk with my mother about the CF care at the hospital on Oahu. She says she only recalls one doc being inadequate during my life with her and that was an ENT doc in NY. Anyway, she couldn't really remember any specifics since it has been so long and we moved a lot in the military. Sorry I couldn't be of more help. I agree with Renee about calling the CF center. I would check to be sure that it wasn't just a pulmonologist but a CF team able to address all of the concerns of CF.

etabetac · May 29, 2009

I also have no personal experience but wonder if you saw this CFF webpage: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/aboutcffoundation/locations/findacarecenter/index.cfm?state=tx">http://www.cff.org/aboutcffoun...ter/index.cfm?state=tx</a> I know that other folks at some point have mentioned that they have gone to this center. I don't remember talks about quality but I'll try and search to see if I can find it.

etabetac · May 29, 2009

I also have no personal experience but wonder if you saw this CFF webpage: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/aboutcffoundation/locations/findacarecenter/index.cfm?state=tx">http://www.cff.org/aboutcffoun...ter/index.cfm?state=tx</a> I know that other folks at some point have mentioned that they have gone to this center. I don't remember talks about quality but I'll try and search to see if I can find it.

etabetac · May 29, 2009

I also have no personal experience but wonder if you saw this CFF webpage: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/aboutcffoundation/locations/findacarecenter/index.cfm?state=tx">http://www.cff.org/aboutcffoun...ter/index.cfm?state=tx</a> I know that other folks at some point have mentioned that they have gone to this center. I don't remember talks about quality but I'll try and search to see if I can find it.

etabetac · May 29, 2009

I also have no personal experience but wonder if you saw this CFF webpage: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/aboutcffoundation/locations/findacarecenter/index.cfm?state=tx">http://www.cff.org/aboutcffoun...ter/index.cfm?state=tx</a> I know that other folks at some point have mentioned that they have gone to this center. I don't remember talks about quality but I'll try and search to see if I can find it.

etabetac · May 29, 2009

I also have no personal experience but wonder if you saw this CFF webpage: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/aboutcffoundation/locations/findacarecenter/index.cfm?state=tx">http://www.cff.org/aboutcffoun...ter/index.cfm?state=tx</a> I know that other folks at some point have mentioned that they have gone to this center. I don't remember talks about quality but I'll try and search to see if I can find it.

Moving to Hawaii

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