New and bewildered

[lightNlife]

Hi Sarah, Welcome to the site. I'm so sorry for the reasons that drew you here, particularly your own diagnosis and the sadness of watching your brother die of the disease.

I'm in the United States, so I'm unfamiliar with what the health care situation and CF centers are like in your country. Nonetheless, now that you know what you're up against with this disease you will be much better able to get what you need before you get too sick. You sound like you've had a relatively uncomplicated go of it so far. I wish you continued health.

Give yourself time to take it all in. It can definitely be information overload. There's lots of great information here. Some of it can be frightening, some of it may be exactly what you need, some of it may encourage you, and some of it may not even apply to your situation. If you find yourself getting too overwhelmed, don't be afraid to just take a step back for a little while.

Just to give you a little background about me, I'm 27 and have been married for 4 years now. I really didn't have too many problems or complications with CF (other than great difficulty gaining weight) until I was a teenager. I've gone through rough patches here and there, but also have enjoyed long stretches of good health. If you'd ever like to know a little more about me and read some of my thoughts about how I go through life with CF, you can visit my blog <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com
">http://livingwellwithCF.blogspot.com
</a>
Thank you for sharing with us. I hope you find this site helpful.

Warmest Regards,
Lauren

 

[lightNlife]

Hi Sarah, Welcome to the site. I'm so sorry for the reasons that drew you here, particularly your own diagnosis and the sadness of watching your brother die of the disease.

I'm in the United States, so I'm unfamiliar with what the health care situation and CF centers are like in your country. Nonetheless, now that you know what you're up against with this disease you will be much better able to get what you need before you get too sick. You sound like you've had a relatively uncomplicated go of it so far. I wish you continued health.

Give yourself time to take it all in. It can definitely be information overload. There's lots of great information here. Some of it can be frightening, some of it may be exactly what you need, some of it may encourage you, and some of it may not even apply to your situation. If you find yourself getting too overwhelmed, don't be afraid to just take a step back for a little while.

Just to give you a little background about me, I'm 27 and have been married for 4 years now. I really didn't have too many problems or complications with CF (other than great difficulty gaining weight) until I was a teenager. I've gone through rough patches here and there, but also have enjoyed long stretches of good health. If you'd ever like to know a little more about me and read some of my thoughts about how I go through life with CF, you can visit my blog <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com
">http://livingwellwithCF.blogspot.com
</a>
Thank you for sharing with us. I hope you find this site helpful.

Warmest Regards,
Lauren

 

[lightNlife]

Hi Sarah, Welcome to the site. I'm so sorry for the reasons that drew you here, particularly your own diagnosis and the sadness of watching your brother die of the disease.

I'm in the United States, so I'm unfamiliar with what the health care situation and CF centers are like in your country. Nonetheless, now that you know what you're up against with this disease you will be much better able to get what you need before you get too sick. You sound like you've had a relatively uncomplicated go of it so far. I wish you continued health.

Give yourself time to take it all in. It can definitely be information overload. There's lots of great information here. Some of it can be frightening, some of it may be exactly what you need, some of it may encourage you, and some of it may not even apply to your situation. If you find yourself getting too overwhelmed, don't be afraid to just take a step back for a little while.

Just to give you a little background about me, I'm 27 and have been married for 4 years now. I really didn't have too many problems or complications with CF (other than great difficulty gaining weight) until I was a teenager. I've gone through rough patches here and there, but also have enjoyed long stretches of good health. If you'd ever like to know a little more about me and read some of my thoughts about how I go through life with CF, you can visit my blog <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com
">http://livingwellwithCF.blogspot.com
</a>
Thank you for sharing with us. I hope you find this site helpful.

Warmest Regards,
Lauren

 

[lightNlife]

Hi Sarah, Welcome to the site. I'm so sorry for the reasons that drew you here, particularly your own diagnosis and the sadness of watching your brother die of the disease.

I'm in the United States, so I'm unfamiliar with what the health care situation and CF centers are like in your country. Nonetheless, now that you know what you're up against with this disease you will be much better able to get what you need before you get too sick. You sound like you've had a relatively uncomplicated go of it so far. I wish you continued health.

Give yourself time to take it all in. It can definitely be information overload. There's lots of great information here. Some of it can be frightening, some of it may be exactly what you need, some of it may encourage you, and some of it may not even apply to your situation. If you find yourself getting too overwhelmed, don't be afraid to just take a step back for a little while.

Just to give you a little background about me, I'm 27 and have been married for 4 years now. I really didn't have too many problems or complications with CF (other than great difficulty gaining weight) until I was a teenager. I've gone through rough patches here and there, but also have enjoyed long stretches of good health. If you'd ever like to know a little more about me and read some of my thoughts about how I go through life with CF, you can visit my blog <a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com
">http://livingwellwithCF.blogspot.com
</a>
Thank you for sharing with us. I hope you find this site helpful.

Warmest Regards,
Lauren

 

[mom2lillian]

HI Sarah,

I am very sorry to hear about your situation. I too am an adult diagnosis, 21, which was 6.5 years ago and went through alot to get diagnosed -- though not nearly what you and your family have went through.

The fact that your brother cultured staph and pseudo is probably a portion of why he deteriorated so fast (in addition to no appropriate treatments). I think that is perhaps why the docs are telling you that you will be different.

I dont know where people over there go for their care but I suggest you get to a CF doc asap and get on a proactive plan of treatment. You want to start doing treatments now to avoid getting sick. Since doing my treatments I am a much healthier person, my lung functions are ~100% so please dont think that you will necessarily follow the same path as your brother. Knowledge is the key.

Also on the topic of infertility. Many women with CF have a hard time conceiving. Many of us ovulate irregularly (though you might be menstruating nnormally) and have thicker cervical mucous making it hard for the sperm to get to their destination. I dont know much about your situation but I would be happy to chat with you more, I have a 6 month old daughter conceived via IVF and my healht is still very good.

Additionally, before you and your husband try for a child again you may want to have carrier testing done on him. Since you have CF if you husband is a carrier there is a 50% chance your child woudl have CF and a 50% chance they would be a carrier.

 

[mom2lillian]

HI Sarah,

I am very sorry to hear about your situation. I too am an adult diagnosis, 21, which was 6.5 years ago and went through alot to get diagnosed -- though not nearly what you and your family have went through.

The fact that your brother cultured staph and pseudo is probably a portion of why he deteriorated so fast (in addition to no appropriate treatments). I think that is perhaps why the docs are telling you that you will be different.

I dont know where people over there go for their care but I suggest you get to a CF doc asap and get on a proactive plan of treatment. You want to start doing treatments now to avoid getting sick. Since doing my treatments I am a much healthier person, my lung functions are ~100% so please dont think that you will necessarily follow the same path as your brother. Knowledge is the key.

Also on the topic of infertility. Many women with CF have a hard time conceiving. Many of us ovulate irregularly (though you might be menstruating nnormally) and have thicker cervical mucous making it hard for the sperm to get to their destination. I dont know much about your situation but I would be happy to chat with you more, I have a 6 month old daughter conceived via IVF and my healht is still very good.

Additionally, before you and your husband try for a child again you may want to have carrier testing done on him. Since you have CF if you husband is a carrier there is a 50% chance your child woudl have CF and a 50% chance they would be a carrier.

 

[mom2lillian]

HI Sarah,

I am very sorry to hear about your situation. I too am an adult diagnosis, 21, which was 6.5 years ago and went through alot to get diagnosed -- though not nearly what you and your family have went through.

The fact that your brother cultured staph and pseudo is probably a portion of why he deteriorated so fast (in addition to no appropriate treatments). I think that is perhaps why the docs are telling you that you will be different.

I dont know where people over there go for their care but I suggest you get to a CF doc asap and get on a proactive plan of treatment. You want to start doing treatments now to avoid getting sick. Since doing my treatments I am a much healthier person, my lung functions are ~100% so please dont think that you will necessarily follow the same path as your brother. Knowledge is the key.

Also on the topic of infertility. Many women with CF have a hard time conceiving. Many of us ovulate irregularly (though you might be menstruating nnormally) and have thicker cervical mucous making it hard for the sperm to get to their destination. I dont know much about your situation but I would be happy to chat with you more, I have a 6 month old daughter conceived via IVF and my healht is still very good.

Additionally, before you and your husband try for a child again you may want to have carrier testing done on him. Since you have CF if you husband is a carrier there is a 50% chance your child woudl have CF and a 50% chance they would be a carrier.

 

[mom2lillian]

HI Sarah,

I am very sorry to hear about your situation. I too am an adult diagnosis, 21, which was 6.5 years ago and went through alot to get diagnosed -- though not nearly what you and your family have went through.

The fact that your brother cultured staph and pseudo is probably a portion of why he deteriorated so fast (in addition to no appropriate treatments). I think that is perhaps why the docs are telling you that you will be different.

I dont know where people over there go for their care but I suggest you get to a CF doc asap and get on a proactive plan of treatment. You want to start doing treatments now to avoid getting sick. Since doing my treatments I am a much healthier person, my lung functions are ~100% so please dont think that you will necessarily follow the same path as your brother. Knowledge is the key.

Also on the topic of infertility. Many women with CF have a hard time conceiving. Many of us ovulate irregularly (though you might be menstruating nnormally) and have thicker cervical mucous making it hard for the sperm to get to their destination. I dont know much about your situation but I would be happy to chat with you more, I have a 6 month old daughter conceived via IVF and my healht is still very good.

Additionally, before you and your husband try for a child again you may want to have carrier testing done on him. Since you have CF if you husband is a carrier there is a 50% chance your child woudl have CF and a 50% chance they would be a carrier.

 

[mom2lillian]

HI Sarah,

I am very sorry to hear about your situation. I too am an adult diagnosis, 21, which was 6.5 years ago and went through alot to get diagnosed -- though not nearly what you and your family have went through.

The fact that your brother cultured staph and pseudo is probably a portion of why he deteriorated so fast (in addition to no appropriate treatments). I think that is perhaps why the docs are telling you that you will be different.

I dont know where people over there go for their care but I suggest you get to a CF doc asap and get on a proactive plan of treatment. You want to start doing treatments now to avoid getting sick. Since doing my treatments I am a much healthier person, my lung functions are ~100% so please dont think that you will necessarily follow the same path as your brother. Knowledge is the key.

Also on the topic of infertility. Many women with CF have a hard time conceiving. Many of us ovulate irregularly (though you might be menstruating nnormally) and have thicker cervical mucous making it hard for the sperm to get to their destination. I dont know much about your situation but I would be happy to chat with you more, I have a 6 month old daughter conceived via IVF and my healht is still very good.

Additionally, before you and your husband try for a child again you may want to have carrier testing done on him. Since you have CF if you husband is a carrier there is a 50% chance your child woudl have CF and a 50% chance they would be a carrier.

 

[mom2lillian]

HI Sarah,

I am very sorry to hear about your situation. I too am an adult diagnosis, 21, which was 6.5 years ago and went through alot to get diagnosed -- though not nearly what you and your family have went through.

The fact that your brother cultured staph and pseudo is probably a portion of why he deteriorated so fast (in addition to no appropriate treatments). I think that is perhaps why the docs are telling you that you will be different.

I dont know where people over there go for their care but I suggest you get to a CF doc asap and get on a proactive plan of treatment. You want to start doing treatments now to avoid getting sick. Since doing my treatments I am a much healthier person, my lung functions are ~100% so please dont think that you will necessarily follow the same path as your brother. Knowledge is the key.

Also on the topic of infertility. Many women with CF have a hard time conceiving. Many of us ovulate irregularly (though you might be menstruating nnormally) and have thicker cervical mucous making it hard for the sperm to get to their destination. I dont know much about your situation but I would be happy to chat with you more, I have a 6 month old daughter conceived via IVF and my healht is still very good.

Additionally, before you and your husband try for a child again you may want to have carrier testing done on him. Since you have CF if you husband is a carrier there is a 50% chance your child woudl have CF and a 50% chance they would be a carrier.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>schmunks</b></i>



The team at the hospital i attend are very helpful and tell me that what i saw happen to my brother won't happen to me. How can they be so sure?
</end quote></div>

I do think it's irresponsible for your care team to predict the future. I think you need to hang around this board and read all you can about CF care.

Whether you live a different life than your brother is going to be up to you in terms the of the preventative care that you receive.

Preventative CPT (Chest Precussion Therapy), various nebulized medicines, etc will help you stay healthy. <b> <u>The name of the game is CF now is prevention as opposed to just treating symptoms as they arise. </u> </b>

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>schmunks</b></i>



The team at the hospital i attend are very helpful and tell me that what i saw happen to my brother won't happen to me. How can they be so sure?
</end quote></div>

I do think it's irresponsible for your care team to predict the future. I think you need to hang around this board and read all you can about CF care.

Whether you live a different life than your brother is going to be up to you in terms the of the preventative care that you receive.

Preventative CPT (Chest Precussion Therapy), various nebulized medicines, etc will help you stay healthy. <b> <u>The name of the game is CF now is prevention as opposed to just treating symptoms as they arise. </u> </b>

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>schmunks</b></i>



The team at the hospital i attend are very helpful and tell me that what i saw happen to my brother won't happen to me. How can they be so sure?
</end quote></div>

I do think it's irresponsible for your care team to predict the future. I think you need to hang around this board and read all you can about CF care.

Whether you live a different life than your brother is going to be up to you in terms the of the preventative care that you receive.

Preventative CPT (Chest Precussion Therapy), various nebulized medicines, etc will help you stay healthy. <b> <u>The name of the game is CF now is prevention as opposed to just treating symptoms as they arise. </u> </b>

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>schmunks</b></i>



The team at the hospital i attend are very helpful and tell me that what i saw happen to my brother won't happen to me. How can they be so sure?
</end quote></div>

I do think it's irresponsible for your care team to predict the future. I think you need to hang around this board and read all you can about CF care.

Whether you live a different life than your brother is going to be up to you in terms the of the preventative care that you receive.

Preventative CPT (Chest Precussion Therapy), various nebulized medicines, etc will help you stay healthy. <b> <u>The name of the game is CF now is prevention as opposed to just treating symptoms as they arise. </u> </b>

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>schmunks</b></i>



The team at the hospital i attend are very helpful and tell me that what i saw happen to my brother won't happen to me. How can they be so sure?
</end quote>

I do think it's irresponsible for your care team to predict the future. I think you need to hang around this board and read all you can about CF care.

Whether you live a different life than your brother is going to be up to you in terms the of the preventative care that you receive.

Preventative CPT (Chest Precussion Therapy), various nebulized medicines, etc will help you stay healthy. <b> <u>The name of the game is CF now is prevention as opposed to just treating symptoms as they arise. </u> </b>

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>schmunks</b></i>



The team at the hospital i attend are very helpful and tell me that what i saw happen to my brother won't happen to me. How can they be so sure?
</end quote>

I do think it's irresponsible for your care team to predict the future. I think you need to hang around this board and read all you can about CF care.

Whether you live a different life than your brother is going to be up to you in terms the of the preventative care that you receive.

Preventative CPT (Chest Precussion Therapy), various nebulized medicines, etc will help you stay healthy. <b> <u>The name of the game is CF now is prevention as opposed to just treating symptoms as they arise. </u> </b>

 

[Alyssa]

Hello Sarah,

It is very tragic that your brother was not diagnosed sooner in life. I'm sorry for your loss. To answer your question "do you think it is acceptable ...." No, I do not think so -- it is my understanding that most CF genes originate from Europe - for doctors there to not think of CF when someone has repeat lung infections seems strange to me. But then, we are all hearing about later and later aged diagnosis when dealing with the more mild variant gene types.

As for your health, sounds like you have been fortunate so far -- although nobody can ever say 100% what is going to happen, the gene combination you have, has been associated with more mild cases of CF -- it appears that you are following that rule of thumb so far. Yes, CF is progressive, but it at least you can say you are still on the mild side so far. My kids have the exact same genes as you and your brother have -- Delta F508 & R117H. It is the R177H that is classified as the "mild" gene... meaning it functions close to normal so your body can function closer to normal that with other CF genes types.

If you have time, please read the first page of my blog (link below) to learn more about my kids, their symptoms & treatment. My daughter was misdiagnosed for 8 years -- they said she had "asthma with productive cough" Had she not been correctly diagnosed at age 14, she too may have been in the same predicament as your brother later on in life.

As for fertility problems -- yes it is common for women (and men) to have fertility problems -- in women the problem is thick mucus around the cervix that prevents the sperm from entering. Other people can tell you more about that -- I have heard that some women have been able to thin the mucus by taking Benadryl daily. Knowing that you have both CF genes, you may also want to look into carrier testing for your spouse/partner because you will pass on one of your CF genes to your baby. Many people want to know if their partner has a CF gene to pass on too. If your partner is not a carrier you have nothing to worry about - your child will only get the one gene from you (which would not cause them to have CF) and a normal one from your spouse/partner.

Now that you know you have CF you should be able to find out more from your doctors about everything. Be sure to go to a facility that is very experienced in treating adults with CF, it will make all the difference in the world in regards to your health.

This must be a very scary time for you -- I'm glad you found this site - you will gain a lot of knowledge and friendship here. Best wishes and please keep us posted.

 

[Alyssa]

Hello Sarah,

It is very tragic that your brother was not diagnosed sooner in life. I'm sorry for your loss. To answer your question "do you think it is acceptable ...." No, I do not think so -- it is my understanding that most CF genes originate from Europe - for doctors there to not think of CF when someone has repeat lung infections seems strange to me. But then, we are all hearing about later and later aged diagnosis when dealing with the more mild variant gene types.

As for your health, sounds like you have been fortunate so far -- although nobody can ever say 100% what is going to happen, the gene combination you have, has been associated with more mild cases of CF -- it appears that you are following that rule of thumb so far. Yes, CF is progressive, but it at least you can say you are still on the mild side so far. My kids have the exact same genes as you and your brother have -- Delta F508 & R117H. It is the R177H that is classified as the "mild" gene... meaning it functions close to normal so your body can function closer to normal that with other CF genes types.

If you have time, please read the first page of my blog (link below) to learn more about my kids, their symptoms & treatment. My daughter was misdiagnosed for 8 years -- they said she had "asthma with productive cough" Had she not been correctly diagnosed at age 14, she too may have been in the same predicament as your brother later on in life.

As for fertility problems -- yes it is common for women (and men) to have fertility problems -- in women the problem is thick mucus around the cervix that prevents the sperm from entering. Other people can tell you more about that -- I have heard that some women have been able to thin the mucus by taking Benadryl daily. Knowing that you have both CF genes, you may also want to look into carrier testing for your spouse/partner because you will pass on one of your CF genes to your baby. Many people want to know if their partner has a CF gene to pass on too. If your partner is not a carrier you have nothing to worry about - your child will only get the one gene from you (which would not cause them to have CF) and a normal one from your spouse/partner.

Now that you know you have CF you should be able to find out more from your doctors about everything. Be sure to go to a facility that is very experienced in treating adults with CF, it will make all the difference in the world in regards to your health.

This must be a very scary time for you -- I'm glad you found this site - you will gain a lot of knowledge and friendship here. Best wishes and please keep us posted.

 

[Alyssa]

Hello Sarah,

It is very tragic that your brother was not diagnosed sooner in life. I'm sorry for your loss. To answer your question "do you think it is acceptable ...." No, I do not think so -- it is my understanding that most CF genes originate from Europe - for doctors there to not think of CF when someone has repeat lung infections seems strange to me. But then, we are all hearing about later and later aged diagnosis when dealing with the more mild variant gene types.

As for your health, sounds like you have been fortunate so far -- although nobody can ever say 100% what is going to happen, the gene combination you have, has been associated with more mild cases of CF -- it appears that you are following that rule of thumb so far. Yes, CF is progressive, but it at least you can say you are still on the mild side so far. My kids have the exact same genes as you and your brother have -- Delta F508 & R117H. It is the R177H that is classified as the "mild" gene... meaning it functions close to normal so your body can function closer to normal that with other CF genes types.

If you have time, please read the first page of my blog (link below) to learn more about my kids, their symptoms & treatment. My daughter was misdiagnosed for 8 years -- they said she had "asthma with productive cough" Had she not been correctly diagnosed at age 14, she too may have been in the same predicament as your brother later on in life.

As for fertility problems -- yes it is common for women (and men) to have fertility problems -- in women the problem is thick mucus around the cervix that prevents the sperm from entering. Other people can tell you more about that -- I have heard that some women have been able to thin the mucus by taking Benadryl daily. Knowing that you have both CF genes, you may also want to look into carrier testing for your spouse/partner because you will pass on one of your CF genes to your baby. Many people want to know if their partner has a CF gene to pass on too. If your partner is not a carrier you have nothing to worry about - your child will only get the one gene from you (which would not cause them to have CF) and a normal one from your spouse/partner.

Now that you know you have CF you should be able to find out more from your doctors about everything. Be sure to go to a facility that is very experienced in treating adults with CF, it will make all the difference in the world in regards to your health.

This must be a very scary time for you -- I'm glad you found this site - you will gain a lot of knowledge and friendship here. Best wishes and please keep us posted.

 

[Alyssa]

Hello Sarah,

It is very tragic that your brother was not diagnosed sooner in life. I'm sorry for your loss. To answer your question "do you think it is acceptable ...." No, I do not think so -- it is my understanding that most CF genes originate from Europe - for doctors there to not think of CF when someone has repeat lung infections seems strange to me. But then, we are all hearing about later and later aged diagnosis when dealing with the more mild variant gene types.

As for your health, sounds like you have been fortunate so far -- although nobody can ever say 100% what is going to happen, the gene combination you have, has been associated with more mild cases of CF -- it appears that you are following that rule of thumb so far. Yes, CF is progressive, but it at least you can say you are still on the mild side so far. My kids have the exact same genes as you and your brother have -- Delta F508 & R117H. It is the R177H that is classified as the "mild" gene... meaning it functions close to normal so your body can function closer to normal that with other CF genes types.

If you have time, please read the first page of my blog (link below) to learn more about my kids, their symptoms & treatment. My daughter was misdiagnosed for 8 years -- they said she had "asthma with productive cough" Had she not been correctly diagnosed at age 14, she too may have been in the same predicament as your brother later on in life.

As for fertility problems -- yes it is common for women (and men) to have fertility problems -- in women the problem is thick mucus around the cervix that prevents the sperm from entering. Other people can tell you more about that -- I have heard that some women have been able to thin the mucus by taking Benadryl daily. Knowing that you have both CF genes, you may also want to look into carrier testing for your spouse/partner because you will pass on one of your CF genes to your baby. Many people want to know if their partner has a CF gene to pass on too. If your partner is not a carrier you have nothing to worry about - your child will only get the one gene from you (which would not cause them to have CF) and a normal one from your spouse/partner.

Now that you know you have CF you should be able to find out more from your doctors about everything. Be sure to go to a facility that is very experienced in treating adults with CF, it will make all the difference in the world in regards to your health.

This must be a very scary time for you -- I'm glad you found this site - you will gain a lot of knowledge and friendship here. Best wishes and please keep us posted.