Climate Info

[lscharlat]

I'm totally new at this and not sure if I'm doing this right but here goes. I am a mom of a 4 year old daughter (her name is Anna) who has recently been diagnosed with CF, we live in NJ and we are considering relocating to Arizona due to Anna's condition. Please give me any input you may have on whether you think the climate in AZ is beneficial or not, any input would be helpful. Thank you!

 

[lscharlat]

I'm totally new at this and not sure if I'm doing this right but here goes. I am a mom of a 4 year old daughter (her name is Anna) who has recently been diagnosed with CF, we live in NJ and we are considering relocating to Arizona due to Anna's condition. Please give me any input you may have on whether you think the climate in AZ is beneficial or not, any input would be helpful. Thank you!

 

[lscharlat]

I'm totally new at this and not sure if I'm doing this right but here goes. I am a mom of a 4 year old daughter (her name is Anna) who has recently been diagnosed with CF, we live in NJ and we are considering relocating to Arizona due to Anna's condition. Please give me any input you may have on whether you think the climate in AZ is beneficial or not, any input would be helpful. Thank you!

 

[mneville]

Hi mom to Anna. We have a 2 year old son diagnosed at birth and we live in NJ also. We live in Pt Pleasant on the shore. We have been told by many doctors that location doesn't matter all that much. In fact the Jersey shore is perfect for Aidan. The beach is great for CFers and we take Aidan all the time in the summer. Aidan is doing very well and stays healthiest in the summer when we can get him in the ocean. Hope Anna is doing well? What center do you go to? We go to Dr Zanni in Long Branch.

Megan

 

[mneville]

Hi mom to Anna. We have a 2 year old son diagnosed at birth and we live in NJ also. We live in Pt Pleasant on the shore. We have been told by many doctors that location doesn't matter all that much. In fact the Jersey shore is perfect for Aidan. The beach is great for CFers and we take Aidan all the time in the summer. Aidan is doing very well and stays healthiest in the summer when we can get him in the ocean. Hope Anna is doing well? What center do you go to? We go to Dr Zanni in Long Branch.

Megan

 

[mneville]

Hi mom to Anna. We have a 2 year old son diagnosed at birth and we live in NJ also. We live in Pt Pleasant on the shore. We have been told by many doctors that location doesn't matter all that much. In fact the Jersey shore is perfect for Aidan. The beach is great for CFers and we take Aidan all the time in the summer. Aidan is doing very well and stays healthiest in the summer when we can get him in the ocean. Hope Anna is doing well? What center do you go to? We go to Dr Zanni in Long Branch.

Megan

 

[lscharlat]

Hi Megan, thanks so much for the response, Anna is doing okay, was in the hospital this past week because of a virus she is fighting. I'm glad to hear Aiden is doing so well. Anna's doctor is Dr. Bieler out of Morristown Memorial Hospital, he's a great doctor and most of all Anna really likes him. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[lscharlat]

Hi Megan, thanks so much for the response, Anna is doing okay, was in the hospital this past week because of a virus she is fighting. I'm glad to hear Aiden is doing so well. Anna's doctor is Dr. Bieler out of Morristown Memorial Hospital, he's a great doctor and most of all Anna really likes him. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[lscharlat]

Hi Megan, thanks so much for the response, Anna is doing okay, was in the hospital this past week because of a virus she is fighting. I'm glad to hear Aiden is doing so well. Anna's doctor is Dr. Bieler out of Morristown Memorial Hospital, he's a great doctor and most of all Anna really likes him. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[sdelorenzo]

Welcome! I am not sure how much a role the climate plays for those with cf. Some say the salt in the air near the beach is good while others say a dryer climate. Have you taken a look at the cff.org website?

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CareCenterData/
">http://www.cff.org/LivingWithC...twork/CareCenterData/
</a>
I would say your best bet is to find an excellent cf center whose life expectancy is far above average. We take my kids to the cf center in Minn. Their life expectancy is around 10 years more than the average center. I think it has nothing to do with the climate but the care the doctors give. That center also did a study to determine if those cf patients who live in the country with clean air did better than those with cf who live near polluted air. What they found is those who live in polluted cities did better. Why - the MN clinic thinks it is because they were closer to the cf center. I imagine clean air is important but so is good care.
Happy New Year!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[sdelorenzo]

Welcome! I am not sure how much a role the climate plays for those with cf. Some say the salt in the air near the beach is good while others say a dryer climate. Have you taken a look at the cff.org website?

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CareCenterData/
">http://www.cff.org/LivingWithC...twork/CareCenterData/
</a>
I would say your best bet is to find an excellent cf center whose life expectancy is far above average. We take my kids to the cf center in Minn. Their life expectancy is around 10 years more than the average center. I think it has nothing to do with the climate but the care the doctors give. That center also did a study to determine if those cf patients who live in the country with clean air did better than those with cf who live near polluted air. What they found is those who live in polluted cities did better. Why - the MN clinic thinks it is because they were closer to the cf center. I imagine clean air is important but so is good care.
Happy New Year!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[sdelorenzo]

Welcome! I am not sure how much a role the climate plays for those with cf. Some say the salt in the air near the beach is good while others say a dryer climate. Have you taken a look at the cff.org website?

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CareCenterData/
">http://www.cff.org/LivingWithC...twork/CareCenterData/
</a>
I would say your best bet is to find an excellent cf center whose life expectancy is far above average. We take my kids to the cf center in Minn. Their life expectancy is around 10 years more than the average center. I think it has nothing to do with the climate but the care the doctors give. That center also did a study to determine if those cf patients who live in the country with clean air did better than those with cf who live near polluted air. What they found is those who live in polluted cities did better. Why - the MN clinic thinks it is because they were closer to the cf center. I imagine clean air is important but so is good care.
Happy New Year!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[Alyssa]

I too have been told that where you choose to live does not/will not make as much of a difference as attending your clinic visits every three months and doing the recommended treatments.

Arizona might have a slight advantage over NJ just because in the winter your daughter *might* be less prone to getting a cold in the winter-time, based on the assumption that with the warmer weather fewer people are spreading a cold virus around to catch in the first place. (often times a lung infection will have started with a cold)

I'd have to agree with Sharon's post -- it's getting good treatment that makes the difference, but don't count on the CFF's recent release of information (rating system) for individual clinic numbers for mortality rates -- the results can be skewed....some centers numbers look worse just because they are a transplant center, so people with lower lung function transfer there and bring down the average lung function numbers as well as the mortality rates so if you do use the rating system to make your decision, be sure to gather all the facts and remember it's only a guideline and ONLY ONE tool to be used in the decision making process -- it should not be used as your only decision making item.

There may also be some small amount of truth to the living by the ocean thing -- the recent discovery of using Hypertonic Saline in the treatment of those with CF came about because some smart doctor noticed his patients who were surfers in Australia (breathing in a lot of salt air) had better lung function !

In my opinion.... live where you want, just make sure your daughter has a CFF center you can easily get to and a team that you are comfortable and happy with.

Best wishes.

 

[Alyssa]

I too have been told that where you choose to live does not/will not make as much of a difference as attending your clinic visits every three months and doing the recommended treatments.

Arizona might have a slight advantage over NJ just because in the winter your daughter *might* be less prone to getting a cold in the winter-time, based on the assumption that with the warmer weather fewer people are spreading a cold virus around to catch in the first place. (often times a lung infection will have started with a cold)

I'd have to agree with Sharon's post -- it's getting good treatment that makes the difference, but don't count on the CFF's recent release of information (rating system) for individual clinic numbers for mortality rates -- the results can be skewed....some centers numbers look worse just because they are a transplant center, so people with lower lung function transfer there and bring down the average lung function numbers as well as the mortality rates so if you do use the rating system to make your decision, be sure to gather all the facts and remember it's only a guideline and ONLY ONE tool to be used in the decision making process -- it should not be used as your only decision making item.

There may also be some small amount of truth to the living by the ocean thing -- the recent discovery of using Hypertonic Saline in the treatment of those with CF came about because some smart doctor noticed his patients who were surfers in Australia (breathing in a lot of salt air) had better lung function !

In my opinion.... live where you want, just make sure your daughter has a CFF center you can easily get to and a team that you are comfortable and happy with.

Best wishes.

 

[Alyssa]

I too have been told that where you choose to live does not/will not make as much of a difference as attending your clinic visits every three months and doing the recommended treatments.

Arizona might have a slight advantage over NJ just because in the winter your daughter *might* be less prone to getting a cold in the winter-time, based on the assumption that with the warmer weather fewer people are spreading a cold virus around to catch in the first place. (often times a lung infection will have started with a cold)

I'd have to agree with Sharon's post -- it's getting good treatment that makes the difference, but don't count on the CFF's recent release of information (rating system) for individual clinic numbers for mortality rates -- the results can be skewed....some centers numbers look worse just because they are a transplant center, so people with lower lung function transfer there and bring down the average lung function numbers as well as the mortality rates so if you do use the rating system to make your decision, be sure to gather all the facts and remember it's only a guideline and ONLY ONE tool to be used in the decision making process -- it should not be used as your only decision making item.

There may also be some small amount of truth to the living by the ocean thing -- the recent discovery of using Hypertonic Saline in the treatment of those with CF came about because some smart doctor noticed his patients who were surfers in Australia (breathing in a lot of salt air) had better lung function !

In my opinion.... live where you want, just make sure your daughter has a CFF center you can easily get to and a team that you are comfortable and happy with.

Best wishes.

 

[JazzysMom]

The only thing that I can think of as far as environment that would affect things for sure is polution. CFers with a high asmtha caponent are more apt to have difficulties. I live in the country, but my clinic is in NYC & I can feel the difference even when I am well. Allergies are another trigger, but its not necessarily the climate. ONce again the environment. Certain areas have certain things that grow etc even with similar climates. I personally would not survive the heat 24/7/365. Especially the temps it gets to in some hotter areas.

 

[JazzysMom]

The only thing that I can think of as far as environment that would affect things for sure is polution. CFers with a high asmtha caponent are more apt to have difficulties. I live in the country, but my clinic is in NYC & I can feel the difference even when I am well. Allergies are another trigger, but its not necessarily the climate. ONce again the environment. Certain areas have certain things that grow etc even with similar climates. I personally would not survive the heat 24/7/365. Especially the temps it gets to in some hotter areas.

 

[JazzysMom]

The only thing that I can think of as far as environment that would affect things for sure is polution. CFers with a high asmtha caponent are more apt to have difficulties. I live in the country, but my clinic is in NYC & I can feel the difference even when I am well. Allergies are another trigger, but its not necessarily the climate. ONce again the environment. Certain areas have certain things that grow etc even with similar climates. I personally would not survive the heat 24/7/365. Especially the temps it gets to in some hotter areas.

 

[usedtobeinca]

I've wondered the same thing, though our cf docs (and I think the foundation website too) say that climate is not a factor in cf outcomes. We're located near Portland, Ore, and I've thought about the damp climate being detrimental quite a lot. As our username implies, we used to live in California - but in reviewing the Cf center data online, I don't see the #s from centers in our old locale (L.A., O.C.) being better than where we are now. So I'm inclined also to think that it's the care received and not the location (though an optimal combo of the two might be possible?), among a ton of other variables, that determine cf outcomes.

Beware also of the temps if looking near Phoenix or Tuscon - our docs have also mentioned that cfers don't tolerate extreme high temps as well and become more easily overheated, which has its own problems. On the other hand, AZ is a state of diverse climates (snowy/mountains in the N & E, hot desert in the S & W), so you might find a spot that's just right. Lots to consider I suppose.

The near-to-coast idea is an interesting one though - I wonder if the relationship has been formally studied or simply <i>noticed</i>.

 

[usedtobeinca]

I've wondered the same thing, though our cf docs (and I think the foundation website too) say that climate is not a factor in cf outcomes. We're located near Portland, Ore, and I've thought about the damp climate being detrimental quite a lot. As our username implies, we used to live in California - but in reviewing the Cf center data online, I don't see the #s from centers in our old locale (L.A., O.C.) being better than where we are now. So I'm inclined also to think that it's the care received and not the location (though an optimal combo of the two might be possible?), among a ton of other variables, that determine cf outcomes.

Beware also of the temps if looking near Phoenix or Tuscon - our docs have also mentioned that cfers don't tolerate extreme high temps as well and become more easily overheated, which has its own problems. On the other hand, AZ is a state of diverse climates (snowy/mountains in the N & E, hot desert in the S & W), so you might find a spot that's just right. Lots to consider I suppose.

The near-to-coast idea is an interesting one though - I wonder if the relationship has been formally studied or simply <i>noticed</i>.