Hi I am a newlywed married to someone with cf!

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GrantsWife

New member
Hello. My name is Alisha and I am from Virginia. I met my now husband online in May 2008 and he is from Canada. His name is Grant and we are both 20 years old. We just got married on May 28, 2010 and are happy to get a real start on our life. Though dealing with immigration for me to live in Canada and him having Cystic Fibrosis is very difficult at times. Until I am approved for permanent residence then I am only here with him temporarily.

I get very afraid of them refusing our application and I do not know what we will do without each other. I mean what if he gets sick again. He came to visit me in the US from November 2008 to March 2009 and when I came back home with him, he had a checkup. At the time I was still learning about his disease. He had to stay in the hospital for 3 weeks and I was alone. Though I did stay sleeping with in the hospital for a week even though I wasn't supposed to.

It was then I learned how to really help him and care for him. His lung function went from 77% to 43% in a matter of 4 months. <img src="i/expressions/face-icon-small-sad.gif" border="0"> It has taken him more than a year to get it back to the high seventies. I am afraid if I am refused that he wouldn't be able to visit again. I really hope it is approved so he can continue to stay with the doctors that have treated him since he was a child and plus everything is offered free.

I know this post isn't really getting anywhere but I guess I just need someone to talk to. To know I am not alone with being a wife of someone with CF. Sometimes it just doesn't seem like everyone understands. But my husband is my whole life and world.

I worry that we won't be able to have children of our own, that he won't live past 37, etc.

I just want to know, besides preparing his masks, is there anything that I can do to help him and make him as healthy as can be? I just want him to live a long life with me.

Also, what is the highest some peoples lung functions can be? Is it possible for him to get any higher than 77%?
 
G

GrantsWife

New member
Hello. My name is Alisha and I am from Virginia. I met my now husband online in May 2008 and he is from Canada. His name is Grant and we are both 20 years old. We just got married on May 28, 2010 and are happy to get a real start on our life. Though dealing with immigration for me to live in Canada and him having Cystic Fibrosis is very difficult at times. Until I am approved for permanent residence then I am only here with him temporarily.

I get very afraid of them refusing our application and I do not know what we will do without each other. I mean what if he gets sick again. He came to visit me in the US from November 2008 to March 2009 and when I came back home with him, he had a checkup. At the time I was still learning about his disease. He had to stay in the hospital for 3 weeks and I was alone. Though I did stay sleeping with in the hospital for a week even though I wasn't supposed to.

It was then I learned how to really help him and care for him. His lung function went from 77% to 43% in a matter of 4 months. <img src="i/expressions/face-icon-small-sad.gif" border="0"> It has taken him more than a year to get it back to the high seventies. I am afraid if I am refused that he wouldn't be able to visit again. I really hope it is approved so he can continue to stay with the doctors that have treated him since he was a child and plus everything is offered free.

I know this post isn't really getting anywhere but I guess I just need someone to talk to. To know I am not alone with being a wife of someone with CF. Sometimes it just doesn't seem like everyone understands. But my husband is my whole life and world.

I worry that we won't be able to have children of our own, that he won't live past 37, etc.

I just want to know, besides preparing his masks, is there anything that I can do to help him and make him as healthy as can be? I just want him to live a long life with me.

Also, what is the highest some peoples lung functions can be? Is it possible for him to get any higher than 77%?
 
G

GrantsWife

New member
Hello. My name is Alisha and I am from Virginia. I met my now husband online in May 2008 and he is from Canada. His name is Grant and we are both 20 years old. We just got married on May 28, 2010 and are happy to get a real start on our life. Though dealing with immigration for me to live in Canada and him having Cystic Fibrosis is very difficult at times. Until I am approved for permanent residence then I am only here with him temporarily.
<br />
<br />I get very afraid of them refusing our application and I do not know what we will do without each other. I mean what if he gets sick again. He came to visit me in the US from November 2008 to March 2009 and when I came back home with him, he had a checkup. At the time I was still learning about his disease. He had to stay in the hospital for 3 weeks and I was alone. Though I did stay sleeping with in the hospital for a week even though I wasn't supposed to.
<br />
<br />It was then I learned how to really help him and care for him. His lung function went from 77% to 43% in a matter of 4 months. <img src="i/expressions/face-icon-small-sad.gif" border="0"> It has taken him more than a year to get it back to the high seventies. I am afraid if I am refused that he wouldn't be able to visit again. I really hope it is approved so he can continue to stay with the doctors that have treated him since he was a child and plus everything is offered free.
<br />
<br />I know this post isn't really getting anywhere but I guess I just need someone to talk to. To know I am not alone with being a wife of someone with CF. Sometimes it just doesn't seem like everyone understands. But my husband is my whole life and world.
<br />
<br />I worry that we won't be able to have children of our own, that he won't live past 37, etc.
<br />
<br />I just want to know, besides preparing his masks, is there anything that I can do to help him and make him as healthy as can be? I just want him to live a long life with me.
<br />
<br />Also, what is the highest some peoples lung functions can be? Is it possible for him to get any higher than 77%?
 
J

jpetersen

New member
Read <a target=_blank class=ftalternatingbarlinklarge href="http://www.runsickboyrun.com">http://www.runsickboyrun.com</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://www.cffatboy.com">http://www.cffatboy.com</a> - you just sound lost, confused, and uninformed about what you got into - but these sites will help. Living real life with real CF. Both married dudes, too. I can't really help you with most of what you wrote here, because I don't know what "preparing his masks" means, but your functions can go as high as your scarring and diseased tissue will allow after infections are under control. 77% is about right for his age, depending on his mutation - I'm at 36% and living a perfectly fine, reduced physical activity life, but nothing stops me from going to Disney for the day and riding the rides, if that's a concern.
 
J

jpetersen

New member
Read <a target=_blank class=ftalternatingbarlinklarge href="http://www.runsickboyrun.com">http://www.runsickboyrun.com</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://www.cffatboy.com">http://www.cffatboy.com</a> - you just sound lost, confused, and uninformed about what you got into - but these sites will help. Living real life with real CF. Both married dudes, too. I can't really help you with most of what you wrote here, because I don't know what "preparing his masks" means, but your functions can go as high as your scarring and diseased tissue will allow after infections are under control. 77% is about right for his age, depending on his mutation - I'm at 36% and living a perfectly fine, reduced physical activity life, but nothing stops me from going to Disney for the day and riding the rides, if that's a concern.
 
J

jpetersen

New member
Read <a target=_blank class=ftalternatingbarlinklarge href="http://www.runsickboyrun.com">http://www.runsickboyrun.com</a> and <a target=_blank class=ftalternatingbarlinklarge href="http://www.cffatboy.com">http://www.cffatboy.com</a> - you just sound lost, confused, and uninformed about what you got into - but these sites will help. Living real life with real CF. Both married dudes, too. I can't really help you with most of what you wrote here, because I don't know what "preparing his masks" means, but your functions can go as high as your scarring and diseased tissue will allow after infections are under control. 77% is about right for his age, depending on his mutation - I'm at 36% and living a perfectly fine, reduced physical activity life, but nothing stops me from going to Disney for the day and riding the rides, if that's a concern.
 
B

b12bc

New member
It is not easy for anybody to deal with every day, whether it is you or a loved one, especially if this is a very "new" experience for you. I don't have much specific advice other than to find blogs and stories and continue to talk to others who are in a similar position as you, as you've already begun to do here.

I am 20 as well and my lung function on a really good day can be in the 90s, and on a bad day can be in the low 80s. When I'm sick it drops significantly lower. Physical activity I've found is essential to keeping me healthy, so encourage him to do as much as he can without exerting himself too much. I was a competitive swimmer for years and my lung function was that of a healthy, "normal" non-CFer for many years.

Best of luck to you both!
 
B

b12bc

New member
It is not easy for anybody to deal with every day, whether it is you or a loved one, especially if this is a very "new" experience for you. I don't have much specific advice other than to find blogs and stories and continue to talk to others who are in a similar position as you, as you've already begun to do here.

I am 20 as well and my lung function on a really good day can be in the 90s, and on a bad day can be in the low 80s. When I'm sick it drops significantly lower. Physical activity I've found is essential to keeping me healthy, so encourage him to do as much as he can without exerting himself too much. I was a competitive swimmer for years and my lung function was that of a healthy, "normal" non-CFer for many years.

Best of luck to you both!
 
B

b12bc

New member
It is not easy for anybody to deal with every day, whether it is you or a loved one, especially if this is a very "new" experience for you. I don't have much specific advice other than to find blogs and stories and continue to talk to others who are in a similar position as you, as you've already begun to do here.
<br />
<br />I am 20 as well and my lung function on a really good day can be in the 90s, and on a bad day can be in the low 80s. When I'm sick it drops significantly lower. Physical activity I've found is essential to keeping me healthy, so encourage him to do as much as he can without exerting himself too much. I was a competitive swimmer for years and my lung function was that of a healthy, "normal" non-CFer for many years.
<br />
<br />Best of luck to you both!
 
B

b12bc

New member
It is not easy for anybody to deal with every day, whether it is you or a loved one, especially if this is a very "new" experience for you. I don't have much specific advice other than to find blogs and stories and continue to talk to others who are in a similar position as you, as you've already begun to do here.

I am 20 as well and my lung function on a really good day can be in the 90s, and on a bad day can be in the low 80s. When I'm sick it drops significantly lower. Physical activity I've found is essential to keeping me healthy, so encourage him to do as much as he can without exerting himself too much. I was a competitive swimmer for years and my lung function was that of a healthy, "normal" non-CFer for many years.

Best of luck to you both!
 
B

b12bc

New member
It is not easy for anybody to deal with every day, whether it is you or a loved one, especially if this is a very "new" experience for you. I don't have much specific advice other than to find blogs and stories and continue to talk to others who are in a similar position as you, as you've already begun to do here.

I am 20 as well and my lung function on a really good day can be in the 90s, and on a bad day can be in the low 80s. When I'm sick it drops significantly lower. Physical activity I've found is essential to keeping me healthy, so encourage him to do as much as he can without exerting himself too much. I was a competitive swimmer for years and my lung function was that of a healthy, "normal" non-CFer for many years.

Best of luck to you both!
 
B

b12bc

New member
It is not easy for anybody to deal with every day, whether it is you or a loved one, especially if this is a very "new" experience for you. I don't have much specific advice other than to find blogs and stories and continue to talk to others who are in a similar position as you, as you've already begun to do here.
<br />
<br />I am 20 as well and my lung function on a really good day can be in the 90s, and on a bad day can be in the low 80s. When I'm sick it drops significantly lower. Physical activity I've found is essential to keeping me healthy, so encourage him to do as much as he can without exerting himself too much. I was a competitive swimmer for years and my lung function was that of a healthy, "normal" non-CFer for many years.
<br />
<br />Best of luck to you both!
 
J

jennylivingston

Guest
You have chosen a very informative and caring community. Take a look around, check out the forums and blogs, ask any questions you have and I promise you will learn SO MUCH here!
 
J

jennylivingston

Guest
You have chosen a very informative and caring community. Take a look around, check out the forums and blogs, ask any questions you have and I promise you will learn SO MUCH here!
 
J

jennylivingston

Guest
You have chosen a very informative and caring community. Take a look around, check out the forums and blogs, ask any questions you have and I promise you will learn SO MUCH here!
 
G

GrantsWife

New member
Thank you kindly everyone. And jpetersen, thank you for your bit of sharing and information. However, I am not completely lost. I do know a bit more than my husband knows about his own disease. I just had a few extra questions.

And "preparing his masks" means that I kindly put his medicine into his nebulizer masks for him. Not because he doesn't want to or doesn't but because I feel more involved and he often likes that. I will admit that yes I am still learning but I am not "lost".
 
G

GrantsWife

New member
Thank you kindly everyone. And jpetersen, thank you for your bit of sharing and information. However, I am not completely lost. I do know a bit more than my husband knows about his own disease. I just had a few extra questions.

And "preparing his masks" means that I kindly put his medicine into his nebulizer masks for him. Not because he doesn't want to or doesn't but because I feel more involved and he often likes that. I will admit that yes I am still learning but I am not "lost".
 
G

GrantsWife

New member
Thank you kindly everyone. And jpetersen, thank you for your bit of sharing and information. However, I am not completely lost. I do know a bit more than my husband knows about his own disease. I just had a few extra questions.
<br />
<br />And "preparing his masks" means that I kindly put his medicine into his nebulizer masks for him. Not because he doesn't want to or doesn't but because I feel more involved and he often likes that. I will admit that yes I am still learning but I am not "lost".
 
M

MissAlexsBP

Guest
Hello!

While, I have CF, and am not the wife of someone with it, I'm always available to talk for whatever reason, even if it's questions or just to chat! Good luck!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

MissAlexsBP

Guest
Hello!

While, I have CF, and am not the wife of someone with it, I'm always available to talk for whatever reason, even if it's questions or just to chat! Good luck!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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