Hi, Hoping someone can give me some advice... I have 5 children, 2 of whom have CF. I am originally from Kentucky, which is where both the girls were diagnosed and cared for. I moved to Minnesota about 4 years ago and that's where I currently live. My girls (ages 9 and 5) are both very healthy, never require hospitalizations and are basically symptom free as long as we do treatments twice a day and take enzymes like they should. They are both on TOBI but have had clean throat cultures for the last 6 months. Two more clean cultures and they can go off TOBI. My question is regarding weather and climate issues. My husband is very unhappy in MN due to the extreme cold weather. He wants to move somewhere warmer, particularily south TX is where he wants to go. It would be an extreme change from the cold winters to very hot summers. Because I know that the average life expectancy in MN is 45 compared to nationally being 32, I am concerned about moving. I don't know exactly why the life expectency is so much higher here, if it's the CF center (which is GREAT, btw) or if it has anything to do with climate but I'm kind of feeling like I'm afraid to risk moving because they are doing so well. (If it's not broke, don't fix it sort of thing...) Has anyone found any research regarding climates and CF? I have heard that the hot, dry climate is actually very good for them but don't know if that's true and haven't been able to find any info online. And is there anyone who goes to the CF clinic in San Antonio and can give me some info about that? We are considering moving to the McAllen area but the closest CF center I can find online is in San Antonio, so that's where we'd probably have to go. Any advice or info would be greatly appreciated. It's so nervewracking to make huge decisions like this that could possibly effect the health and lives of my children. I want to get all my ducks in a row before deciding anything...Thanks in advance... Best wishes to all...
Question about Climate and CF
- Thread starter anonymous
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I go to the CF center in San Antonio, Santa Rosa one. I love it. The whole staff (nurses to doctors) are wonderful. I have heard of one pedi doc that isn't to good but I think she is at a different hospital. I wouldn't trade my Cf Center for anything. They are all wonderfull and when your in the hospital for antibotics the nurses there know what cf is and if they are new they are told to listen to what the CFer has to say. So you don't get many problems with nurses. I used to go to the Dallas CF center I was there my whole life with the pedis and they are wonderful too. I like the hospital there and the nurses basically the same as the san antonio center except the hospital is nicer (huge rooms-newer facility). I changed centers because I moved and San Antonio was much closer and I am very thankful that theya re so great too. So I would recomenned either Dallas (Childrens Hospital) or San Antonio (Santa Rosa) CF centers....great people who really care (they are more personal at Santa Rosa because they are smaller-if you like the more personal)
As for climates it varies person to person. I talk to alot of cfers on the internet. Some love the cooler climates, others the warmer, some love the beach...all for health. I think it depends on your severity or how your cf reacts to weather and where you grew up. For me I have asthma too so cold weather is harsher on me. But I have also grown up in texas so that could be a factor too. The best places to live is smaller towns away from big cities with air pollutants. I live far enough away from San Antonio when they have air alerts it doesn't bother me. I wouldn't recommend living in Houston because they have air quality alerts just about everyday. I even have a friend with cf who lives there and since she moved to houston (she lived a few hours from houston then moved into houston) her health has declined very fast. She has always used the Texas Childrens Cf clinic there too and isn't very happy with it.
It has been my experience talking with fellow cfers that most of the time they do better away from bigger cities.
If I were you I would talk to your kids docs and see what they think. One good thing about Texas weather is that the winters aren;t very long and although summer is hot you can swim alot longer (great for Cf) and the falls are beautiful. The part of texas that would be great climate wise is what they call the Hill Country. Trees every where. Summers do get hot but not as hot as the desert part, it rains often, not as humid as the coast though and its very pretty but not to far from big cities but far enough to keep the polutants away.
Anyway I hope this may help some on your clinic question. The other is a bit harder to answer since everyone with cf is different. You may not know until your kids are older but one may do better in the cooler climate while the other does better in the warmer one. Thats how cf goes though.
Amanda
As for climates it varies person to person. I talk to alot of cfers on the internet. Some love the cooler climates, others the warmer, some love the beach...all for health. I think it depends on your severity or how your cf reacts to weather and where you grew up. For me I have asthma too so cold weather is harsher on me. But I have also grown up in texas so that could be a factor too. The best places to live is smaller towns away from big cities with air pollutants. I live far enough away from San Antonio when they have air alerts it doesn't bother me. I wouldn't recommend living in Houston because they have air quality alerts just about everyday. I even have a friend with cf who lives there and since she moved to houston (she lived a few hours from houston then moved into houston) her health has declined very fast. She has always used the Texas Childrens Cf clinic there too and isn't very happy with it.
It has been my experience talking with fellow cfers that most of the time they do better away from bigger cities.
If I were you I would talk to your kids docs and see what they think. One good thing about Texas weather is that the winters aren;t very long and although summer is hot you can swim alot longer (great for Cf) and the falls are beautiful. The part of texas that would be great climate wise is what they call the Hill Country. Trees every where. Summers do get hot but not as hot as the desert part, it rains often, not as humid as the coast though and its very pretty but not to far from big cities but far enough to keep the polutants away.
Anyway I hope this may help some on your clinic question. The other is a bit harder to answer since everyone with cf is different. You may not know until your kids are older but one may do better in the cooler climate while the other does better in the warmer one. Thats how cf goes though.
Amanda
I'm not sure this is what you are looking for but were considering a move due to air pollutants and someone else directed me to this site: http://www.news-medical.net/?id=196
Perhaps you can find the answers you are looking for on the same site, otherwise, this might be something to consider when looking for a new home. It has prompted us to move out of our current home and we hope to be settled in the next few months.
Heather
Perhaps you can find the answers you are looking for on the same site, otherwise, this might be something to consider when looking for a new home. It has prompted us to move out of our current home and we hope to be settled in the next few months.
Heather
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Guest
Oh yes my favorite subject... If you are going to move to Texas one thing to take into consideration is the humidity. It can get extremely humid at some points. I know that before I had my transplant, that I could barely breath when it was humid out... but that might be because of my poor health. Also there are a lot of pollens in the air with the different type of trees and the dryness, sometimes that can get really heavy in the air. So if you have pollen allergies this might not be the best place. I also agree with amanda, small towns are better than big cities with less pollution and stuff in the air (especially the Hill Country... where I live). Also, the pedi doctor who is not well liked is over at Methodist, not Santa Rosa. The CF pedi Doctor at Santa Rosa is TERRIFIC!!!! Actually they all are since they work in a group. I admire and respect each and every one of them. They are the best doctors I have ever come across. They are competent and compassionate. They know what they are doing, and they won't talk over your head. They listen and they know what they are doing. The hospital is top notch too. I've never met better people. Overall I'd definitely recommend these people to anyone who was thinking about moving to TX.
Oh yes the humiditiy does get bad and it has been bothering me some this summer...more rain. I used to live in a drier town but it wasnt the "desert" of texas either but it was drier than the hill country and i didn't have as much problems with humidity there. (san angelo if your wondering). Anyway if you can't already tell candice and I have the same CF center in San Antonio she just has the experience of the pedi docs not me. Anywho I hope we helped answer something.
As to the last poster sorry I am of no help.
amanda
As to the last poster sorry I am of no help.
amanda
Hi!
I take my daughter to the C F center in Denver, which is also very good. Maya is three years old and also doing very well. Dr. Accurso, the director of CF research in Denver, told us that statisics can be very misleading. Statistics can be tweaked several ways. Median numbers are found by systematically crossing off the highest and lowest numbers in a line until the number in the middle remains. So if I had a line of like, 1,5,6,6, 20,40,45,45,45, the number in the middle would be 20, although the average would be 17. I found the MN website and was concerned because the median age was higher in MN. Dr. Accurso said that was not true. So I would be careful as to base your information on stats. If what you are doing is working well in MN, do it where you move to. The only concern I would have would be that our doctor said that PA, the bacteria, was more prevalient in more humid climates. In Denver, it is very dry and our toothbrushes dry overnight. Still, we are advised to wash them in the dishwasher to get rid of any bacteria. The temperature is too hot in the dishwasher for the bacteria to live.
From what I understand, the major hubs for CF research are Denver, Seattle, Maryland, and Minnesota, and these would be the best places to live because of the avalibility of new drugs during trials, and information. The live expectancy also rises 6 months for every year of a C F patient's life, because of the new drugs these kids grew up on. And with the new drugs that are hopefully coming out soon, who knows? The median age could be 60 someday soon. That is what the Denver C F foundation was forcasting for the new drugs coming out targeting the root of the disease, mainly, enspire, which is in phase II now and doing better that expected. Dr. Accurso also said gene therapy should be perfected in about 5 years. Nothing is guaranteed, and the damage that is being done now is irreversable. I am one of those moms that doctors have to assure all the time, and I wondered what would happen if the lung element was corrected. The pancreas is ruined, and diabetes, gallbladder, liver, and reproductive problems loom. And they dont even know what else will go wrong because c f patients never got to that point before, as far as old age goes. Who knows what the body looks like after 60 years of CF? But Dr Accurso said something else that made sense. In forty years or so, what is diabetes medicine going to look like? Think where we were 40 years ago in medicine, and think how far we can advance in the future. You have to just live one day at a time and wait out the unbearable days. There is nothing else to do.
For the parent that is having their kids tested, just know that even if they are healthy, negative for CF, nothing is guaranteed. Healthy kids can die in accidents and we could lose them too. You just have to cherish every single day and never take them for granted. Fill their lives with love, and your life will be filled with meaning. Maya has no cough, she runs and plays, and is the happiest, most beautiful little girl I have ever seen. I just cherish her for the days that I have her, and hopefully she will be around for the rest of my life.
jenirein@yahoo.com
I take my daughter to the C F center in Denver, which is also very good. Maya is three years old and also doing very well. Dr. Accurso, the director of CF research in Denver, told us that statisics can be very misleading. Statistics can be tweaked several ways. Median numbers are found by systematically crossing off the highest and lowest numbers in a line until the number in the middle remains. So if I had a line of like, 1,5,6,6, 20,40,45,45,45, the number in the middle would be 20, although the average would be 17. I found the MN website and was concerned because the median age was higher in MN. Dr. Accurso said that was not true. So I would be careful as to base your information on stats. If what you are doing is working well in MN, do it where you move to. The only concern I would have would be that our doctor said that PA, the bacteria, was more prevalient in more humid climates. In Denver, it is very dry and our toothbrushes dry overnight. Still, we are advised to wash them in the dishwasher to get rid of any bacteria. The temperature is too hot in the dishwasher for the bacteria to live.
From what I understand, the major hubs for CF research are Denver, Seattle, Maryland, and Minnesota, and these would be the best places to live because of the avalibility of new drugs during trials, and information. The live expectancy also rises 6 months for every year of a C F patient's life, because of the new drugs these kids grew up on. And with the new drugs that are hopefully coming out soon, who knows? The median age could be 60 someday soon. That is what the Denver C F foundation was forcasting for the new drugs coming out targeting the root of the disease, mainly, enspire, which is in phase II now and doing better that expected. Dr. Accurso also said gene therapy should be perfected in about 5 years. Nothing is guaranteed, and the damage that is being done now is irreversable. I am one of those moms that doctors have to assure all the time, and I wondered what would happen if the lung element was corrected. The pancreas is ruined, and diabetes, gallbladder, liver, and reproductive problems loom. And they dont even know what else will go wrong because c f patients never got to that point before, as far as old age goes. Who knows what the body looks like after 60 years of CF? But Dr Accurso said something else that made sense. In forty years or so, what is diabetes medicine going to look like? Think where we were 40 years ago in medicine, and think how far we can advance in the future. You have to just live one day at a time and wait out the unbearable days. There is nothing else to do.
For the parent that is having their kids tested, just know that even if they are healthy, negative for CF, nothing is guaranteed. Healthy kids can die in accidents and we could lose them too. You just have to cherish every single day and never take them for granted. Fill their lives with love, and your life will be filled with meaning. Maya has no cough, she runs and plays, and is the happiest, most beautiful little girl I have ever seen. I just cherish her for the days that I have her, and hopefully she will be around for the rest of my life.
jenirein@yahoo.com
Thanks so much for all your information. I really appreciate the help. I'm probably freaking out for no reason, but parents like us have to take many more precautions than those with healthy children. Every decision has to be made with caution for fear of making the wrong one...don't get me wrong, all parents have to consider their children when making decisions, but when it's life or death you're talking about it's a little more stressful. My girls are so healthy now that other than treatments and enzymes I really don't think much about CF on a daily basis but I don't want to take that for granted. The first hint of a cold and it comes back like a bomb that they have CF...reality check...I am calling my Dr. to discuss this with him and get an opinion about the enviormental concerns and the climate issues. It's pretty darn humid in MN in the summer as well so I don't see why that would really make much difference. My bigger concern is the CF center and care they would receive there, and from the responses it seems that shouldn't be a real concern. As for the issue of life expectancy, I know that has to be taken with a grain of salt...the 45 in MN sounds good but I don't take that as the word of God or anything. Much more depends on the child, the care they receive and how severe the particular case is. I guess it's just a number that sounds better than average so it's a little hope to cling to. And as we all know, hope gets us through things we might otherwise not be able to handle. One of the reasons for my concern is that when we were in another state when the girls were small, my older daughter had many more health problems. She was sick from 9 months old until she was 3...(she wasn't diagnosed until she was 2 1/2 thou, despite several hospitalizations)...her last hospitalization was on her 3rd birthday and she is almost 10 now. In my heart I believe that had more to do with her diagnosis and the care she finally began to receive so her health improved dramatically, but being the precautious mother that I find myself being, I have to consider the idea that maybe it was the move to MN that helped her. And that makes me nervous about moving away. (and of course the issues of changing insurance, schools, etc, etc, etc...the list of worries goes on and on and on....) Again, Thanks so very much for all your information... Best wishes to each and every one of you!
PS....I really like your quote Candice.... That sums it up very well! Ignore the numbers and do your best... That's all we can really do!
Renee
PS....I really like your quote Candice.... That sums it up very well! Ignore the numbers and do your best... That's all we can really do!
Renee
}Thank you, I was surfing the boards and hearing everybody talk about life expectancy when I realized that I've never known what the average life expectancy is... I don't want to know honestly. I figured if I did know, when I hit 30 or whatever it is I'd just give up. Yup, I lived to the full age expectancy... And I don't want to do that. I want to live for all my tomorrows, not 30 years worth.
-Candice
-Candice
I don't live in TX but live in Eastern New Mexico, climate dry and hot with very mild winters. But we do travel to the area of TX you are talking about and when their humidity is high which is often My son with CF has a hard time breathing. Not so at home. It doesn't seem to bother my daughter with CF as much but she is healther over all.
HI, We asked our daughters' CF docs and respiratory tech one year about the different climates and if one was better than another. Being military we had more of a choice than most people in places that we could possibly live. We lived in N. Carolina when they were diagnosed, lived in DFW, Texas, Florida, Arizona, Germany, Ohio, and Nebraska. This is what they told us. All places have their unique and possible problems. You could be exchanging one issue for another. While living in Arizona we were exploring the possibility of moving to Massachusetts. Our concern, the colder weather. Was that better or worse? Their explanation was, there we would be trading the hot summers for colder, longer winters, obviously, but also we must think about being cooped up all winter. More colds etc because of the confinement to closed homes, buildings etc. Ok, so what about a rainy environment? Kind of the same issues. Humidity? Air is thicker, harder to breathe for some. Dry heat? Seems good all around but then with the desert environment you need to worry about dehydration, and valley fever (for AZ). In all the places we've lived we think our kids seemed to do their worst in Ohio. Too many allergies. Maybe it was just a bad year. They tend to feel great while visiting family in Fl for up to three weeks at a time. They said they felt great in Key Largo with all the salt air and salt water. This mid-west climate seems to be doing well for them too. That is where we are now. AZ had the dry air but we had to be careful of air alerts. But the schools were great for making sure all kids stayed indoors on high ozone days. We also had a pool so they got lots of exercise, more than when we lived in Germany because it was cold in the winter and rainy most of the rest of the time. So really, as it was stated before, it depends on the individual. If your husband and you are seriously thinking about south Texas, take your kids there for a trip. See how they do. How do they feel while down there? I am a native Texan so I am partial to Texas. We will be returning there next year when we retire from the Air Force. Hope some of this helped.
Liza
(Mom of two teenage girls w/cf)
Liza
(Mom of two teenage girls w/cf)
Hi all...this is my first trip to the boards...and I've been contemplating all week about asking this climate question...our family is military as well...our daughter who is nine has been diagnosed since the age of one...fortunately, for us...she has been pretty healthy...we were stationed very close to our hometown in Florida at the time of her diagnosis...we were treated at UF/Shands...cultures grew Pseudomonas almost every visit...when Amanda turned five...we moved to North Texas...and were treated at OU...during the entire four years we never had a Pseudomonas culture...even after having a bronchosocopy...well...fast forward to present...we are now back in Florida...and our first visit to our new CF center in Birmingham...has us growing Pseudomonas...coincidence??? That's my question...it's hard for me to believe that climate does not play a factor...we've been back to Florida since June...and by July we had Psuedomonas again...I would love to hear some opinions on this as well...thanks for any input...oh...also...one more question??? Next military assignment is to Virginia...would love to hear from anyone who has any knowlege of CF centers near the Langley AFB area...looking forward to hearing from you all...: )
Dina (mom to Amanda 9 w/cf)
Dina (mom to Amanda 9 w/cf)
You mentioned humidity in Minnesota...well, I have to share a story.
We went to So Dakota one summer & they were complaining about how humid it was there and I was just enjoying being away from the Kansas humidity...I could handle the So Dakota humidity a lot better!
Also, as a kid my sister & I (both w/ CF) lived in So Dakota and mom said we just flourished up there.
Could be coincidence, I guess only God knows<img src="i/expressions/face-icon-small-smile.gif" border="0">
We went to So Dakota one summer & they were complaining about how humid it was there and I was just enjoying being away from the Kansas humidity...I could handle the So Dakota humidity a lot better!
Also, as a kid my sister & I (both w/ CF) lived in So Dakota and mom said we just flourished up there.
Could be coincidence, I guess only God knows<img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi Dina, Check out Bethesda Naval Hosp. in Maryland. Don't know how far that is from Langley though. They have a CF center there. I've talked with the person that answers the phone there and they sound extremely friendly and very helpful. PCSing soon? We are at Offut headed for retirement next year. If we go to San Antonio we're going to check out the CF center at Lackland, I hear that one's a good one too. As far as I know, the only two in the military that have a CF center. We were stationed in Tampa when our girls were 2 and 5 for a year. They were seen at the clinic in St. Petersburg.
Liza
Liza
Hi Liza,
Thanks for the info...I do know that there is another AF CF center...and that one is at Keesler AFB, MS...I have also heard some really great things about the center at Lackland...I would love to exchange information with you...if you would like to talk...please contact me...djv0625@aol.com
Hope to hear from you.
Dina
Thanks for the info...I do know that there is another AF CF center...and that one is at Keesler AFB, MS...I have also heard some really great things about the center at Lackland...I would love to exchange information with you...if you would like to talk...please contact me...djv0625@aol.com
Hope to hear from you.
Dina