E
emerenta18
Guest
thanks for your post aleksandra, I'd really appreciate that, it's good to get a better idea of what medication regimes people have in other countries, I hope your daughter is well!
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3849+10kb C to T and Df508, any other people with these mutations?
AleksandraKaczynska
New member
she is just fine so far....if you have any questions ask.
feel free to look up <a target=_blank class=ftalternatingbarlinklarge href="http://asik-ak.blogspot.com/">http://asik-ak.blogspot.com/</a>
feel free to look up <a target=_blank class=ftalternatingbarlinklarge href="http://asik-ak.blogspot.com/">http://asik-ak.blogspot.com/</a>
AleksandraKaczynska
New member
she is just fine so far....if you have any questions ask.
feel free to look up <a target=_blank class=ftalternatingbarlinklarge href="http://asik-ak.blogspot.com/">http://asik-ak.blogspot.com/</a>
feel free to look up <a target=_blank class=ftalternatingbarlinklarge href="http://asik-ak.blogspot.com/">http://asik-ak.blogspot.com/</a>
AleksandraKaczynska
New member
she is just fine so far....if you have any questions ask.
<br />feel free to look up <a target=_blank class=ftalternatingbarlinklarge href="http://asik-ak.blogspot.com/">http://asik-ak.blogspot.com/</a>
<br />feel free to look up <a target=_blank class=ftalternatingbarlinklarge href="http://asik-ak.blogspot.com/">http://asik-ak.blogspot.com/</a>
I have these two mutations. I am 33 years old and considered to have "mild" CF. I have compliactions with CF, but not on the same scale as others, especially considering my age. I do not need enzymes, I have only had IV antibiotics once and that was to treat my sinuses, and my lung function is considered "normal" (>90%). For more information, see my blog www.seeingsnowflakes.blogspot.com
I have these two mutations. I am 33 years old and considered to have "mild" CF. I have compliactions with CF, but not on the same scale as others, especially considering my age. I do not need enzymes, I have only had IV antibiotics once and that was to treat my sinuses, and my lung function is considered "normal" (>90%). For more information, see my blog www.seeingsnowflakes.blogspot.com
I have these two mutations. I am 33 years old and considered to have "mild" CF. I have compliactions with CF, but not on the same scale as others, especially considering my age. I do not need enzymes, I have only had IV antibiotics once and that was to treat my sinuses, and my lung function is considered "normal" (>90%). For more information, see my blog www.seeingsnowflakes.blogspot.com
L
lifeisgood729
Guest
I have these two mutations. I've read that the 3849 mutation generally leads to being pancreatic sufficient. I'm just theorizing, but I believe that my normal nutritional status has helped me a lot. I've always been able to stay at a normal weight, and it seems like current research suggests that a BMI on the higher range of normal is best for us.<br><br>I have cultured pseudomonas since my early twenties, and have been pretty vigilant about keeping up with my treatments since then. My FEV1 still hovers around 60%. I nebulize albuterol, pulmozyme, hyperSal, and antibiotics twice every day, as well as using pharmaNAC regularly, which seems to help me keep down the inflammation. For me, reducing inflammation seems to be the key to avoiding those crisis periods.<br> <br>I struggle with my sinuses, and do saline and antibiotic rinses twice a day, along with several different nasal sprays. <br><br>I am on IV antibiotics usually twice a year. I can no longer use tobramycin because my vestibular system was destroyed by genta years ago. That has added a whole new disability to the mix. I feel a little more fragile as the years go by, but I'm 43 and I'm still here. Every day I wake up is a good day.<br><br>Martha<br><br><br>
L
lifeisgood729
Guest
I have these two mutations. I've read that the 3849 mutation generally leads to being pancreatic sufficient. I'm just theorizing, but I believe that my normal nutritional status has helped me a lot. I've always been able to stay at a normal weight, and it seems like current research suggests that a BMI on the higher range of normal is best for us.<br><br>I have cultured pseudomonas since my early twenties, and have been pretty vigilant about keeping up with my treatments since then. My FEV1 still hovers around 60%. I nebulize albuterol, pulmozyme, hyperSal, and antibiotics twice every day, as well as using pharmaNAC regularly, which seems to help me keep down the inflammation. For me, reducing inflammation seems to be the key to avoiding those crisis periods.<br><br>I struggle with my sinuses, and do saline and antibiotic rinses twice a day, along with several different nasal sprays. <br><br>I am on IV antibiotics usually twice a year. I can no longer use tobramycin because my vestibular system was destroyed by genta years ago. That has added a whole new disability to the mix. I feel a little more fragile as the years go by, but I'm 43 and I'm still here. Every day I wake up is a good day.<br><br>Martha<br><br><br>
L
lifeisgood729
Guest
I have these two mutations. I've read that the 3849 mutation generally leads to being pancreatic sufficient. I'm just theorizing, but I believe that my normal nutritional status has helped me a lot. I've always been able to stay at a normal weight, and it seems like current research suggests that a BMI on the higher range of normal is best for us.<br><br>I have cultured pseudomonas since my early twenties, and have been pretty vigilant about keeping up with my treatments since then. My FEV1 still hovers around 60%. I nebulize albuterol, pulmozyme, hyperSal, and antibiotics twice every day, as well as using pharmaNAC regularly, which seems to help me keep down the inflammation. For me, reducing inflammation seems to be the key to avoiding those crisis periods.<br><br>I struggle with my sinuses, and do saline and antibiotic rinses twice a day, along with several different nasal sprays. <br><br>I am on IV antibiotics usually twice a year. I can no longer use tobramycin because my vestibular system was destroyed by genta years ago. That has added a whole new disability to the mix. I feel a little more fragile as the years go by, but I'm 43 and I'm still here. Every day I wake up is a good day.<br><br>Martha<br><br><br>