<br>Hi, My name is Ashley, I live in Ohio and I was dx'd with having a mild form of CF on 8/29/11. I gained two genetic mutations from my mother and father. That being the Delta F508 and the R117H. I am asystematic - showing no signs at all of cf. My family history shows that my sister had CF showing both of the Delta F508 genes, considering her and I had different fathers but the same mother. She was diagnosed at age three and had passed away at the age of twenty [May 21, 2001]. Which me at that time being 12 I barely understood what was happening besides she was very ill. And being an only child now it just hurts I can't share much about this. My mother is very sensitive about this subject and I talk to her about it at times but I don't want to bring up bad memories of my sister for her. I didn't find out until I did the pregnancy screening test for Cf and I have to say I was in shock and speechless when m OB told me. First I went to two genetic counciling appointments, which from there they said I was a carrier. I didn't get the father tested for certain personal reasons, and when my son came into the world June 23, 2011 we found out he has the R117H. But from now on it's very depressing to know that it runs in my family and that if I were to have anymore kids they would still carry one of my genes =[ My sister was the only one on my mom's side that had full blown CF. They're might be other carriers but we don't know for sure and my dad's side have no signs or such of anyone having CF.I've gotten to go Akron Children's Hosp. and got the sweat test done twice. First time 38 and second was a 48. My sons was negative/normal. They want to do bloods, fecal, and a chest x-ray before they decide they only need to see me once every year. Being a previous smoker and giving it up, my lung functions are with in normal range.I keep remembering all what had happened with my sister and worry. I'm just wondering if anyone else has the same genes I do. I could really use some support since I don't have a sister to console with about this. Whether it's people who have the same genes as me or just someone at least sparing some words of wisedom upon me. Thanks
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- Thread starter ashrawrrr
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<br>Hi, My name is Ashley, I live in Ohio and I was dx'd with having a mild form of CF on 8/29/11. I gained two genetic mutations from my mother and father. That being the Delta F508 and the R117H. I am asystematic - showing no signs at all of cf. My family history shows that my sister had CF showing both of the Delta F508 genes, considering her and I had different fathers but the same mother. She was diagnosed at age three and had passed away at the age of twenty [May 21, 2001]. Which me at that time being 12 I barely understood what was happening besides she was very ill. And being an only child now it just hurts I can't share much about this. My mother is very sensitive about this subject and I talk to her about it at times but I don't want to bring up bad memories of my sister for her. I didn't find out until I did the pregnancy screening test for Cf and I have to say I was in shock and speechless when m OB told me. First I went to two genetic counciling appointments, which from there they said I was a carrier. I didn't get the father tested for certain personal reasons, and when my son came into the world June 23, 2011 we found out he has the R117H. But from now on it's very depressing to know that it runs in my family and that if I were to have anymore kids they would still carry one of my genes =[ My sister was the only one on my mom's side that had full blown CF. They're might be other carriers but we don't know for sure and my dad's side have no signs or such of anyone having CF.I've gotten to goAkron Children's Hosp. and got the sweat test done twice. First time 38 and second was a 48. My sons was negative/normal. They want to do bloods, fecal, and a chest x-ray before they decide they only need to see me once every year. Being a previous smoker and giving it up, my lung functions are with in normal range.I keep remembering all what had happened with my sister and worry. I'm just wondering if anyone else has the same genes I do. I could really use some support since I don't have a sister to console with about this. Whether it's people who have the same genes as me or just someone at least sparing some words of wisedom upon me. Thanks
<p><br>Hi, My name is Ashley, I live in Ohio and I was dx'd with having a mild form of CF on 8/29/11. I gained two genetic mutations from my mother and father. That being the Delta F508 and the R117H. I am asystematic - showing no signs at all of cf. <p>My family history shows that my sister had CF showing both of the Delta F508 genes, considering her and I had different fathers but the same mother. She was diagnosed at age three and had passed away at the age of twenty [May 21, 2001]. Which me at that time being 12 I barely understood what was happening besides she was very ill. And being an only child now it just hurts I can't share much about this. My mother is very sensitive about this subject and I talk to her about it at times but I don't want to bring up bad memories of my sister for her. <p><p>I didn't find out until I did the pregnancy screening test for Cf and I have to say I was in shock and speechless when m OB told me. First I went to two genetic counciling appointments, which from there they said I was a carrier. I didn't get the father tested for certain personal reasons, and when my son came into the world June 23, 2011 we found out he has the R117H. But from now on it's very depressing to know that it runs in my family and that if I were to have anymore kids they would still carry one of my genes =[ My sister was the only one on my mom's side that had full blown CF. They're might be other carriers but we don't know for sure and my dad's side have no signs or such of anyone having CF.<p>I've gotten to goAkron Children's Hosp. and got the sweat test done twice. First time 38 and second was a 48. My sons was negative/normal. They want to do bloods, fecal, and a chest x-ray before they decide they only need to see me once every year. Being a previous smoker and giving it up, my lung functions are with in normal range.<p>I keep remembering all what had happened with my sister and worry. I'm just wondering if anyone else has the same genes I do. I could really use some support since I don't have a sister to console with about this. Whether it's people who have the same genes as me or just someone at least sparing some words of wisedom upon me. <p><p>Thanks
Ashley I am so sorry it must be very hard to hear after everything that happened with your sister. My daughter is 6 and was diagnosed at age 2 she has df508 and an unknown. I learn something new all the time. I would think that I have this down and can handle it and then my little princess shows me otherwise. <img src="i/expressions/face-icon-small-smile.gif" border="0"> In the past 2 years she has had 15 surgeries and counting. She doesn't have many gastric problems. Her main problem is her sinus'. She gets sinus polyps really bad which they have to go in and cut out quite often. Other than that she has one lobe in her lung that is closed off by a lymph node that the docs are hoping she will out grow. To see her you would never suspect there was a thing wrong with her. She is so happy and just a little live wire that just bounces off the walls. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Don't know as I will be much help at answering any of your questions, I just know that there are a lot of very caring people on this forum, and if you have specific questions they are the ones to talk to. I wish you all the luck in the world and congratulations on your precious new arrival. Don't give up on this forum, you got some really knowledgeable people out here. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Ashley I am so sorry it must be very hard to hear after everything that happened with your sister. My daughter is 6 and was diagnosed at age 2 she has df508 and an unknown. I learn something new all the time. I would think that I have this down and can handle it and then my little princess shows me otherwise. <img src="i/expressions/face-icon-small-smile.gif" border="0"> In the past 2 years she has had 15 surgeries and counting. She doesn't have many gastric problems. Her main problem is her sinus'. She gets sinus polyps really bad which they have to go in and cut out quite often. Other than that she has one lobe in her lung that is closed off by a lymph node that the docs are hoping she will out grow. To see her you would never suspect there was a thing wrong with her. She is so happy and just a little live wire that just bounces off the walls. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Don't know as I will be much help at answering any of your questions, I just know that there are a lot of very caring people on this forum, and if you have specific questions they are the ones to talk to. I wish you all the luck in the world and congratulations on your precious new arrival. Don't give up on this forum, you got some really knowledgeable people out here. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Ashley I am so sorry it must be very hard to hear after everything that happened with your sister. My daughter is 6 and was diagnosed at age 2 she has df508 and an unknown. I learn something new all the time. I would think that I have this down and can handle it and then my little princess shows me otherwise. <img src="i/expressions/face-icon-small-smile.gif" border="0"> In the past 2 years she has had 15 surgeries and counting. She doesn't have many gastric problems. Her main problem is her sinus'. She gets sinus polyps really bad which they have to go in and cut out quite often. Other than that she has one lobe in her lung that is closed off by a lymph node that the docs are hoping she will out grow. To see her you would never suspect there was a thing wrong with her. She is so happy and just a little live wire that just bounces off the walls. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Don't know as I will be much help at answering any of your questions, I just know that there are a lot of very caring people on this forum, and if you have specific questions they are the ones to talk to. I wish you all the luck in the world and congratulations on your precious new arrival. Don't give up on this forum, you got some really knowledgeable people out here. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Ashley, welcome to the site.
First of all, I'm so sorry to hear your story, but I want you to know you are definitely not alone.
DF508 is the most common mutation; and R117H is pretty frequent in the population. There should be several people on the site with that combination; however, do realize that mutations alone don't define how the disease will present.
If they know you have 2 mutations; then you have CF. I would expect they will want to be proactive, because while you sound healthy now, the best way to preserve lung function is to be proactive.
I won't lie, it will definitely change your life some, but it will also likely give you the chance to live a full life and raise your son.
The best I can tell you is spend time here, ask questions and make some friends that can help you walk this road. Secondly, be careful with what you find online as a lot of the information on Google is outdated.
First of all, I'm so sorry to hear your story, but I want you to know you are definitely not alone.
DF508 is the most common mutation; and R117H is pretty frequent in the population. There should be several people on the site with that combination; however, do realize that mutations alone don't define how the disease will present.
If they know you have 2 mutations; then you have CF. I would expect they will want to be proactive, because while you sound healthy now, the best way to preserve lung function is to be proactive.
I won't lie, it will definitely change your life some, but it will also likely give you the chance to live a full life and raise your son.
The best I can tell you is spend time here, ask questions and make some friends that can help you walk this road. Secondly, be careful with what you find online as a lot of the information on Google is outdated.
Ashley, welcome to the site.
First of all, I'm so sorry to hear your story, but I want you to know you are definitely not alone.
DF508 is the most common mutation; and R117H is pretty frequent in the population. There should be several people on the site with that combination; however, do realize that mutations alone don't define how the disease will present.
If they know you have 2 mutations; then you have CF. I would expect they will want to be proactive, because while you sound healthy now, the best way to preserve lung function is to be proactive.
I won't lie, it will definitely change your life some, but it will also likely give you the chance to live a full life and raise your son.
The best I can tell you is spend time here, ask questions and make some friends that can help you walk this road. Secondly, be careful with what you find online as a lot of the information on Google is outdated.
First of all, I'm so sorry to hear your story, but I want you to know you are definitely not alone.
DF508 is the most common mutation; and R117H is pretty frequent in the population. There should be several people on the site with that combination; however, do realize that mutations alone don't define how the disease will present.
If they know you have 2 mutations; then you have CF. I would expect they will want to be proactive, because while you sound healthy now, the best way to preserve lung function is to be proactive.
I won't lie, it will definitely change your life some, but it will also likely give you the chance to live a full life and raise your son.
The best I can tell you is spend time here, ask questions and make some friends that can help you walk this road. Secondly, be careful with what you find online as a lot of the information on Google is outdated.
Ashley, welcome to the site.
<br />
<br />First of all, I'm so sorry to hear your story, but I want you to know you are definitely not alone.
<br />
<br />DF508 is the most common mutation; and R117H is pretty frequent in the population. There should be several people on the site with that combination; however, do realize that mutations alone don't define how the disease will present.
<br />
<br />If they know you have 2 mutations; then you have CF. I would expect they will want to be proactive, because while you sound healthy now, the best way to preserve lung function is to be proactive.
<br />
<br />I won't lie, it will definitely change your life some, but it will also likely give you the chance to live a full life and raise your son.
<br />
<br />The best I can tell you is spend time here, ask questions and make some friends that can help you walk this road. Secondly, be careful with what you find online as a lot of the information on Google is outdated.
<br />
<br />First of all, I'm so sorry to hear your story, but I want you to know you are definitely not alone.
<br />
<br />DF508 is the most common mutation; and R117H is pretty frequent in the population. There should be several people on the site with that combination; however, do realize that mutations alone don't define how the disease will present.
<br />
<br />If they know you have 2 mutations; then you have CF. I would expect they will want to be proactive, because while you sound healthy now, the best way to preserve lung function is to be proactive.
<br />
<br />I won't lie, it will definitely change your life some, but it will also likely give you the chance to live a full life and raise your son.
<br />
<br />The best I can tell you is spend time here, ask questions and make some friends that can help you walk this road. Secondly, be careful with what you find online as a lot of the information on Google is outdated.
M
Mommafirst
Guest
Hi Ashley -- I'm so sorry you are dealing with this surprising news. I don't have much to offer besides support, I have a daughter diagnosed shortly after birth. But I also live in Ohio and we go to Akron Children's....I serve on the family council and work as a mentor. If there is anything I can do to help ease this process, let me know.
M
Mommafirst
Guest
Hi Ashley -- I'm so sorry you are dealing with this surprising news. I don't have much to offer besides support, I have a daughter diagnosed shortly after birth. But I also live in Ohio and we go to Akron Children's....I serve on the family council and work as a mentor. If there is anything I can do to help ease this process, let me know.
M
Mommafirst
Guest
Hi Ashley -- I'm so sorry you are dealing with this surprising news. I don't have much to offer besides support, I have a daughter diagnosed shortly after birth. But I also live in Ohio and we go to Akron Children's....I serve on the family council and work as a mentor. If there is anything I can do to help ease this process, let me know.
@ashrawrrr: Hang in there. Be thankful that it's CF (and not f------ cancer), and be extra thankful it's mild.
<br>
<br>Work with a good CF clinic, and get ready to start regularly exercising like a fiend. For the next fifty years. (Ease into it, though, if you're out of shape now.) <br>
<br>
<br>Work with a good CF clinic, and get ready to start regularly exercising like a fiend. For the next fifty years. (Ease into it, though, if you're out of shape now.) <br>
@ashrawrrr: Hang in there. Be thankful that it's CF (and not f------ cancer), and be extra thankful it's mild.
<br>
<br>Work with a good CF clinic, and get ready to start regularly exercising like a fiend. For the next fifty years. (Ease into it, though, if you're out of shape now.) <br>
<br>
<br>Work with a good CF clinic, and get ready to start regularly exercising like a fiend. For the next fifty years. (Ease into it, though, if you're out of shape now.) <br>
@ashrawrrr: Hang in there. Be thankful that it's CF (and not f------ cancer), and be extra thankful it's mild.
<br>
<br>Work with a good CF clinic, and get ready to start regularly exercising like a fiend. For the next fifty years. (Ease into it, though, if you're out of shape now.) <br>
<br>
<br>Work with a good CF clinic, and get ready to start regularly exercising like a fiend. For the next fifty years. (Ease into it, though, if you're out of shape now.) <br>
Thank you all for your support and wise words =] I finally got my chest x-rays and bloods back. Normal. So I am to go every year for a check up, unless something else occurs.
Jenny, thank you so much for writing back. Wow fifteen surgeries in a two year span? Is it a long procedure? Does it take very long to recover like if you were say get tonsils removed? I'm sorry if it's too personal you don't have to answer. =/ I'm just glad you and your daughter are so strong for going through that. It's just really bugging me that no matter who I'm with, unless they are also a carrier for CF, that my children will carry one of my genes. =[ Not something I would love for them to carry on with their whole life and thank you my little boy is doing fine so far. Just turned three months old two weeks ago. They grow up so quick when they come home.
Xin, I'm very thankful it's only a mild case. I don't think my mother could have handled this again after my sister. I do need to start exercising more so I can lose that baby chub, and I also have to watch out for cancer. My mother had breast cancer, 11 years cancer free. But thank you for your wise words.
Tom, thank you for the welcome. I just never realized that I actually had it. I had seen the genetic cousilor who said I was a carrier but I knew there had to be more to it and Dr. Sheers pointed it out. I know it will change my life. I've done so much research while I was younger to educate myself, not by learning online google sites but remember what my sister had to do and all my parents say they had been through. I'm so glad I quit smoking and like I said I do need to find time to exercise it's just so hard when you work full time and have a child. But hey that's no excuse and I know that.
Heather, thank you also for your support and where in Ohio do you live? Or at least what county.
Jenny, thank you so much for writing back. Wow fifteen surgeries in a two year span? Is it a long procedure? Does it take very long to recover like if you were say get tonsils removed? I'm sorry if it's too personal you don't have to answer. =/ I'm just glad you and your daughter are so strong for going through that. It's just really bugging me that no matter who I'm with, unless they are also a carrier for CF, that my children will carry one of my genes. =[ Not something I would love for them to carry on with their whole life and thank you my little boy is doing fine so far. Just turned three months old two weeks ago. They grow up so quick when they come home.
Xin, I'm very thankful it's only a mild case. I don't think my mother could have handled this again after my sister. I do need to start exercising more so I can lose that baby chub, and I also have to watch out for cancer. My mother had breast cancer, 11 years cancer free. But thank you for your wise words.
Tom, thank you for the welcome. I just never realized that I actually had it. I had seen the genetic cousilor who said I was a carrier but I knew there had to be more to it and Dr. Sheers pointed it out. I know it will change my life. I've done so much research while I was younger to educate myself, not by learning online google sites but remember what my sister had to do and all my parents say they had been through. I'm so glad I quit smoking and like I said I do need to find time to exercise it's just so hard when you work full time and have a child. But hey that's no excuse and I know that.
Heather, thank you also for your support and where in Ohio do you live? Or at least what county.
Thank you all for your support and wise words =] I finally got my chest x-rays and bloods back. Normal. So I am to go every year for a check up, unless something else occurs.
Jenny, thank you so much for writing back. Wow fifteen surgeries in a two year span? Is it a long procedure? Does it take very long to recover like if you were say get tonsils removed? I'm sorry if it's too personal you don't have to answer. =/ I'm just glad you and your daughter are so strong for going through that. It's just really bugging me that no matter who I'm with, unless they are also a carrier for CF, that my children will carry one of my genes. =[ Not something I would love for them to carry on with their whole life and thank you my little boy is doing fine so far. Just turned three months old two weeks ago. They grow up so quick when they come home.
Xin, I'm very thankful it's only a mild case. I don't think my mother could have handled this again after my sister. I do need to start exercising more so I can lose that baby chub, and I also have to watch out for cancer. My mother had breast cancer, 11 years cancer free. But thank you for your wise words.
Tom, thank you for the welcome. I just never realized that I actually had it. I had seen the genetic cousilor who said I was a carrier but I knew there had to be more to it and Dr. Sheers pointed it out. I know it will change my life. I've done so much research while I was younger to educate myself, not by learning online google sites but remember what my sister had to do and all my parents say they had been through. I'm so glad I quit smoking and like I said I do need to find time to exercise it's just so hard when you work full time and have a child. But hey that's no excuse and I know that.
Heather, thank you also for your support and where in Ohio do you live? Or at least what county.
Jenny, thank you so much for writing back. Wow fifteen surgeries in a two year span? Is it a long procedure? Does it take very long to recover like if you were say get tonsils removed? I'm sorry if it's too personal you don't have to answer. =/ I'm just glad you and your daughter are so strong for going through that. It's just really bugging me that no matter who I'm with, unless they are also a carrier for CF, that my children will carry one of my genes. =[ Not something I would love for them to carry on with their whole life and thank you my little boy is doing fine so far. Just turned three months old two weeks ago. They grow up so quick when they come home.
Xin, I'm very thankful it's only a mild case. I don't think my mother could have handled this again after my sister. I do need to start exercising more so I can lose that baby chub, and I also have to watch out for cancer. My mother had breast cancer, 11 years cancer free. But thank you for your wise words.
Tom, thank you for the welcome. I just never realized that I actually had it. I had seen the genetic cousilor who said I was a carrier but I knew there had to be more to it and Dr. Sheers pointed it out. I know it will change my life. I've done so much research while I was younger to educate myself, not by learning online google sites but remember what my sister had to do and all my parents say they had been through. I'm so glad I quit smoking and like I said I do need to find time to exercise it's just so hard when you work full time and have a child. But hey that's no excuse and I know that.
Heather, thank you also for your support and where in Ohio do you live? Or at least what county.
Thank you all for your support and wise words =] I finally got my chest x-rays and bloods back. Normal. So I am to go every year for a check up, unless something else occurs.
<br />
<br />Jenny, thank you so much for writing back. Wow fifteen surgeries in a two year span? Is it a long procedure? Does it take very long to recover like if you were say get tonsils removed? I'm sorry if it's too personal you don't have to answer. =/ I'm just glad you and your daughter are so strong for going through that. It's just really bugging me that no matter who I'm with, unless they are also a carrier for CF, that my children will carry one of my genes. =[ Not something I would love for them to carry on with their whole life and thank you my little boy is doing fine so far. Just turned three months old two weeks ago. They grow up so quick when they come home.
<br />
<br />Xin, I'm very thankful it's only a mild case. I don't think my mother could have handled this again after my sister. I do need to start exercising more so I can lose that baby chub, and I also have to watch out for cancer. My mother had breast cancer, 11 years cancer free. But thank you for your wise words.
<br />
<br />Tom, thank you for the welcome. I just never realized that I actually had it. I had seen the genetic cousilor who said I was a carrier but I knew there had to be more to it and Dr. Sheers pointed it out. I know it will change my life. I've done so much research while I was younger to educate myself, not by learning online google sites but remember what my sister had to do and all my parents say they had been through. I'm so glad I quit smoking and like I said I do need to find time to exercise it's just so hard when you work full time and have a child. But hey that's no excuse and I know that.
<br />
<br />Heather, thank you also for your support and where in Ohio do you live? Or at least what county.
<br />
<br />Jenny, thank you so much for writing back. Wow fifteen surgeries in a two year span? Is it a long procedure? Does it take very long to recover like if you were say get tonsils removed? I'm sorry if it's too personal you don't have to answer. =/ I'm just glad you and your daughter are so strong for going through that. It's just really bugging me that no matter who I'm with, unless they are also a carrier for CF, that my children will carry one of my genes. =[ Not something I would love for them to carry on with their whole life and thank you my little boy is doing fine so far. Just turned three months old two weeks ago. They grow up so quick when they come home.
<br />
<br />Xin, I'm very thankful it's only a mild case. I don't think my mother could have handled this again after my sister. I do need to start exercising more so I can lose that baby chub, and I also have to watch out for cancer. My mother had breast cancer, 11 years cancer free. But thank you for your wise words.
<br />
<br />Tom, thank you for the welcome. I just never realized that I actually had it. I had seen the genetic cousilor who said I was a carrier but I knew there had to be more to it and Dr. Sheers pointed it out. I know it will change my life. I've done so much research while I was younger to educate myself, not by learning online google sites but remember what my sister had to do and all my parents say they had been through. I'm so glad I quit smoking and like I said I do need to find time to exercise it's just so hard when you work full time and have a child. But hey that's no excuse and I know that.
<br />
<br />Heather, thank you also for your support and where in Ohio do you live? Or at least what county.
Abby's surgeries are just day surgeries, all of them have been so far. She is the best little trooper in the world, although I have a very sneaky suspicion that she has a very high pain tolerance <img src="i/expressions/face-icon-small-smile.gif" border="0">. She never complains, in fact she fights me on taking the pain medication, I sometimes have to trick her into taking it if I know that she is in pain and won't tell me. It must make her feel funny I guess. Usually the night we come home from the surgery she is bouncing around playing with me chasing behind her telling her to sit down and be calm for me. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Your little one will be have grown before you know it. I just told mine this morning that they can't get to old to crawl up in my lap for snuggle time! I won't allow it! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Congrats on your results that is wonderful!! Hope you keep getting good results!!
Abby's surgeries are just day surgeries, all of them have been so far. She is the best little trooper in the world, although I have a very sneaky suspicion that she has a very high pain tolerance <img src="i/expressions/face-icon-small-smile.gif" border="0">. She never complains, in fact she fights me on taking the pain medication, I sometimes have to trick her into taking it if I know that she is in pain and won't tell me. It must make her feel funny I guess. Usually the night we come home from the surgery she is bouncing around playing with me chasing behind her telling her to sit down and be calm for me. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Your little one will be have grown before you know it. I just told mine this morning that they can't get to old to crawl up in my lap for snuggle time! I won't allow it! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Congrats on your results that is wonderful!! Hope you keep getting good results!!