Help/advice?

InTheZone

New member
Hi all,

This is long but I would really appreciate any haelp or advice.

This is my first post. I was diagnosed at age of 1 (I am almost 28) becuase my sister (younger) was diagnosed. It took a few sweat tests to diagnose me and even then they were borderline (according to my parents) and I can remember that my geno-type had to be sent away for testing. I am not sure what type it is but I think it is an uncommon form. I have never had any real problemas and did not do that much physio when I was younger but I was active. I still am active, I cycle, started jogging and do martial arts. I got sick about 2 years ago, not sure what it was but steroids seemed to sort it out. They said it was aspergillis reaction but I never tested for it. Recently my FEV1 has dropped to 2.8 from 3 and was 3.2. A few years a go it was 4, back when I was exercising a lot. I also have liver disease but have never had problems with it, jsut a few ursofalk a day and osophegial varicies that again dont cause me problems. At the moment i am on a setetide inhaler to see if there is an asthmatic component, I hope there is.

Anyway I migt have to go back on steroids, not to worried about it. Its been 2 years since I was in hospital or on IV's at home.

I was with someone for almost 7 years and we broke up last week. It wasnt over the cf, she is working things out in her life and we may get back together.

However I know she wants kids and I am infertile. She is willing to adopt or get a sperm donor. I have been healthy and I do exercise. She is a doctor and very smart, I love her to bits and she loves me. However I am thinking that maybe I need to tell her I cannot be with her. Set her free so to speak, if I leave her now she might meet someone who can give her kids easily and have a long and happy life with them. It would be the hardest thing I ever did. My friends say that it is not my decision to make, she knows the facts so let her decide. I asked her about it and she said I was strong and fit and she is not worried about the baby stuff. I love her so much that maybe the ultimate act of love is to set her free? If we do get back it is for good, marraige etc. I have struggled with this and at times I feel it is the right thing to do and at other times (after a jog usually and feeling great) I think, No we can be really good together and could go far.

Sorry for the rambling nature of the post but I am pretty tron up inside, with her leaving and being unsure about what will happen health wise. Any advice or experience would be great.
 

InTheZone

New member
Hi all,

This is long but I would really appreciate any haelp or advice.

This is my first post. I was diagnosed at age of 1 (I am almost 28) becuase my sister (younger) was diagnosed. It took a few sweat tests to diagnose me and even then they were borderline (according to my parents) and I can remember that my geno-type had to be sent away for testing. I am not sure what type it is but I think it is an uncommon form. I have never had any real problemas and did not do that much physio when I was younger but I was active. I still am active, I cycle, started jogging and do martial arts. I got sick about 2 years ago, not sure what it was but steroids seemed to sort it out. They said it was aspergillis reaction but I never tested for it. Recently my FEV1 has dropped to 2.8 from 3 and was 3.2. A few years a go it was 4, back when I was exercising a lot. I also have liver disease but have never had problems with it, jsut a few ursofalk a day and osophegial varicies that again dont cause me problems. At the moment i am on a setetide inhaler to see if there is an asthmatic component, I hope there is.

Anyway I migt have to go back on steroids, not to worried about it. Its been 2 years since I was in hospital or on IV's at home.

I was with someone for almost 7 years and we broke up last week. It wasnt over the cf, she is working things out in her life and we may get back together.

However I know she wants kids and I am infertile. She is willing to adopt or get a sperm donor. I have been healthy and I do exercise. She is a doctor and very smart, I love her to bits and she loves me. However I am thinking that maybe I need to tell her I cannot be with her. Set her free so to speak, if I leave her now she might meet someone who can give her kids easily and have a long and happy life with them. It would be the hardest thing I ever did. My friends say that it is not my decision to make, she knows the facts so let her decide. I asked her about it and she said I was strong and fit and she is not worried about the baby stuff. I love her so much that maybe the ultimate act of love is to set her free? If we do get back it is for good, marraige etc. I have struggled with this and at times I feel it is the right thing to do and at other times (after a jog usually and feeling great) I think, No we can be really good together and could go far.

Sorry for the rambling nature of the post but I am pretty tron up inside, with her leaving and being unsure about what will happen health wise. Any advice or experience would be great.
 

InTheZone

New member
Hi all,

This is long but I would really appreciate any haelp or advice.

This is my first post. I was diagnosed at age of 1 (I am almost 28) becuase my sister (younger) was diagnosed. It took a few sweat tests to diagnose me and even then they were borderline (according to my parents) and I can remember that my geno-type had to be sent away for testing. I am not sure what type it is but I think it is an uncommon form. I have never had any real problemas and did not do that much physio when I was younger but I was active. I still am active, I cycle, started jogging and do martial arts. I got sick about 2 years ago, not sure what it was but steroids seemed to sort it out. They said it was aspergillis reaction but I never tested for it. Recently my FEV1 has dropped to 2.8 from 3 and was 3.2. A few years a go it was 4, back when I was exercising a lot. I also have liver disease but have never had problems with it, jsut a few ursofalk a day and osophegial varicies that again dont cause me problems. At the moment i am on a setetide inhaler to see if there is an asthmatic component, I hope there is.

Anyway I migt have to go back on steroids, not to worried about it. Its been 2 years since I was in hospital or on IV's at home.

I was with someone for almost 7 years and we broke up last week. It wasnt over the cf, she is working things out in her life and we may get back together.

However I know she wants kids and I am infertile. She is willing to adopt or get a sperm donor. I have been healthy and I do exercise. She is a doctor and very smart, I love her to bits and she loves me. However I am thinking that maybe I need to tell her I cannot be with her. Set her free so to speak, if I leave her now she might meet someone who can give her kids easily and have a long and happy life with them. It would be the hardest thing I ever did. My friends say that it is not my decision to make, she knows the facts so let her decide. I asked her about it and she said I was strong and fit and she is not worried about the baby stuff. I love her so much that maybe the ultimate act of love is to set her free? If we do get back it is for good, marraige etc. I have struggled with this and at times I feel it is the right thing to do and at other times (after a jog usually and feeling great) I think, No we can be really good together and could go far.

Sorry for the rambling nature of the post but I am pretty tron up inside, with her leaving and being unsure about what will happen health wise. Any advice or experience would be great.
 

InTheZone

New member
Hi all,

This is long but I would really appreciate any haelp or advice.

This is my first post. I was diagnosed at age of 1 (I am almost 28) becuase my sister (younger) was diagnosed. It took a few sweat tests to diagnose me and even then they were borderline (according to my parents) and I can remember that my geno-type had to be sent away for testing. I am not sure what type it is but I think it is an uncommon form. I have never had any real problemas and did not do that much physio when I was younger but I was active. I still am active, I cycle, started jogging and do martial arts. I got sick about 2 years ago, not sure what it was but steroids seemed to sort it out. They said it was aspergillis reaction but I never tested for it. Recently my FEV1 has dropped to 2.8 from 3 and was 3.2. A few years a go it was 4, back when I was exercising a lot. I also have liver disease but have never had problems with it, jsut a few ursofalk a day and osophegial varicies that again dont cause me problems. At the moment i am on a setetide inhaler to see if there is an asthmatic component, I hope there is.

Anyway I migt have to go back on steroids, not to worried about it. Its been 2 years since I was in hospital or on IV's at home.

I was with someone for almost 7 years and we broke up last week. It wasnt over the cf, she is working things out in her life and we may get back together.

However I know she wants kids and I am infertile. She is willing to adopt or get a sperm donor. I have been healthy and I do exercise. She is a doctor and very smart, I love her to bits and she loves me. However I am thinking that maybe I need to tell her I cannot be with her. Set her free so to speak, if I leave her now she might meet someone who can give her kids easily and have a long and happy life with them. It would be the hardest thing I ever did. My friends say that it is not my decision to make, she knows the facts so let her decide. I asked her about it and she said I was strong and fit and she is not worried about the baby stuff. I love her so much that maybe the ultimate act of love is to set her free? If we do get back it is for good, marraige etc. I have struggled with this and at times I feel it is the right thing to do and at other times (after a jog usually and feeling great) I think, No we can be really good together and could go far.

Sorry for the rambling nature of the post but I am pretty tron up inside, with her leaving and being unsure about what will happen health wise. Any advice or experience would be great.
 

InTheZone

New member
Hi all,

This is long but I would really appreciate any haelp or advice.

This is my first post. I was diagnosed at age of 1 (I am almost 28) becuase my sister (younger) was diagnosed. It took a few sweat tests to diagnose me and even then they were borderline (according to my parents) and I can remember that my geno-type had to be sent away for testing. I am not sure what type it is but I think it is an uncommon form. I have never had any real problemas and did not do that much physio when I was younger but I was active. I still am active, I cycle, started jogging and do martial arts. I got sick about 2 years ago, not sure what it was but steroids seemed to sort it out. They said it was aspergillis reaction but I never tested for it. Recently my FEV1 has dropped to 2.8 from 3 and was 3.2. A few years a go it was 4, back when I was exercising a lot. I also have liver disease but have never had problems with it, jsut a few ursofalk a day and osophegial varicies that again dont cause me problems. At the moment i am on a setetide inhaler to see if there is an asthmatic component, I hope there is.

Anyway I migt have to go back on steroids, not to worried about it. Its been 2 years since I was in hospital or on IV's at home.

I was with someone for almost 7 years and we broke up last week. It wasnt over the cf, she is working things out in her life and we may get back together.

However I know she wants kids and I am infertile. She is willing to adopt or get a sperm donor. I have been healthy and I do exercise. She is a doctor and very smart, I love her to bits and she loves me. However I am thinking that maybe I need to tell her I cannot be with her. Set her free so to speak, if I leave her now she might meet someone who can give her kids easily and have a long and happy life with them. It would be the hardest thing I ever did. My friends say that it is not my decision to make, she knows the facts so let her decide. I asked her about it and she said I was strong and fit and she is not worried about the baby stuff. I love her so much that maybe the ultimate act of love is to set her free? If we do get back it is for good, marraige etc. I have struggled with this and at times I feel it is the right thing to do and at other times (after a jog usually and feeling great) I think, No we can be really good together and could go far.

Sorry for the rambling nature of the post but I am pretty tron up inside, with her leaving and being unsure about what will happen health wise. Any advice or experience would be great.
 

InTheZone

New member
Hi all,

This is long but I would really appreciate any haelp or advice.

This is my first post. I was diagnosed at age of 1 (I am almost 28) becuase my sister (younger) was diagnosed. It took a few sweat tests to diagnose me and even then they were borderline (according to my parents) and I can remember that my geno-type had to be sent away for testing. I am not sure what type it is but I think it is an uncommon form. I have never had any real problemas and did not do that much physio when I was younger but I was active. I still am active, I cycle, started jogging and do martial arts. I got sick about 2 years ago, not sure what it was but steroids seemed to sort it out. They said it was aspergillis reaction but I never tested for it. Recently my FEV1 has dropped to 2.8 from 3 and was 3.2. A few years a go it was 4, back when I was exercising a lot. I also have liver disease but have never had problems with it, jsut a few ursofalk a day and osophegial varicies that again dont cause me problems. At the moment i am on a setetide inhaler to see if there is an asthmatic component, I hope there is.

Anyway I migt have to go back on steroids, not to worried about it. Its been 2 years since I was in hospital or on IV's at home.

I was with someone for almost 7 years and we broke up last week. It wasnt over the cf, she is working things out in her life and we may get back together.

However I know she wants kids and I am infertile. She is willing to adopt or get a sperm donor. I have been healthy and I do exercise. She is a doctor and very smart, I love her to bits and she loves me. However I am thinking that maybe I need to tell her I cannot be with her. Set her free so to speak, if I leave her now she might meet someone who can give her kids easily and have a long and happy life with them. It would be the hardest thing I ever did. My friends say that it is not my decision to make, she knows the facts so let her decide. I asked her about it and she said I was strong and fit and she is not worried about the baby stuff. I love her so much that maybe the ultimate act of love is to set her free? If we do get back it is for good, marraige etc. I have struggled with this and at times I feel it is the right thing to do and at other times (after a jog usually and feeling great) I think, No we can be really good together and could go far.

Sorry for the rambling nature of the post but I am pretty tron up inside, with her leaving and being unsure about what will happen health wise. Any advice or experience would be great.
 

JazzysMom

New member
First of all welcome!!! Secondly just because you have CF doesnt mean you cant father children. There is the small % that dont need medical intervention, but for those that do it proves that sperm is produced.....it just cant get from point A to point B because the pathway ends. There are medical procedures to assist with this. This is of course in addition to adoption options. It is her choice & as long as you dont hide this fact & mislead her then let her love you and make that decision. If want more info on the fertility part of things visit Julies site. She & her husband (he has CF) went thru the procedures & now have adorable triplets.

Here is the link:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismaleinfertility.com/
">http://www.cysticfibrosismaleinfertility.com/
</a>

Good Luck!
 

JazzysMom

New member
First of all welcome!!! Secondly just because you have CF doesnt mean you cant father children. There is the small % that dont need medical intervention, but for those that do it proves that sperm is produced.....it just cant get from point A to point B because the pathway ends. There are medical procedures to assist with this. This is of course in addition to adoption options. It is her choice & as long as you dont hide this fact & mislead her then let her love you and make that decision. If want more info on the fertility part of things visit Julies site. She & her husband (he has CF) went thru the procedures & now have adorable triplets.

Here is the link:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismaleinfertility.com/
">http://www.cysticfibrosismaleinfertility.com/
</a>

Good Luck!
 

JazzysMom

New member
First of all welcome!!! Secondly just because you have CF doesnt mean you cant father children. There is the small % that dont need medical intervention, but for those that do it proves that sperm is produced.....it just cant get from point A to point B because the pathway ends. There are medical procedures to assist with this. This is of course in addition to adoption options. It is her choice & as long as you dont hide this fact & mislead her then let her love you and make that decision. If want more info on the fertility part of things visit Julies site. She & her husband (he has CF) went thru the procedures & now have adorable triplets.

Here is the link:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismaleinfertility.com/
">http://www.cysticfibrosismaleinfertility.com/
</a>

Good Luck!
 

JazzysMom

New member
First of all welcome!!! Secondly just because you have CF doesnt mean you cant father children. There is the small % that dont need medical intervention, but for those that do it proves that sperm is produced.....it just cant get from point A to point B because the pathway ends. There are medical procedures to assist with this. This is of course in addition to adoption options. It is her choice & as long as you dont hide this fact & mislead her then let her love you and make that decision. If want more info on the fertility part of things visit Julies site. She & her husband (he has CF) went thru the procedures & now have adorable triplets.

Here is the link:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismaleinfertility.com/
">http://www.cysticfibrosismaleinfertility.com/
</a>

Good Luck!
 

JazzysMom

New member
First of all welcome!!! Secondly just because you have CF doesnt mean you cant father children. There is the small % that dont need medical intervention, but for those that do it proves that sperm is produced.....it just cant get from point A to point B because the pathway ends. There are medical procedures to assist with this. This is of course in addition to adoption options. It is her choice & as long as you dont hide this fact & mislead her then let her love you and make that decision. If want more info on the fertility part of things visit Julies site. She & her husband (he has CF) went thru the procedures & now have adorable triplets.

Here is the link:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismaleinfertility.com/
">http://www.cysticfibrosismaleinfertility.com/
</a>

Good Luck!
 

JazzysMom

New member
First of all welcome!!! Secondly just because you have CF doesnt mean you cant father children. There is the small % that dont need medical intervention, but for those that do it proves that sperm is produced.....it just cant get from point A to point B because the pathway ends. There are medical procedures to assist with this. This is of course in addition to adoption options. It is her choice & as long as you dont hide this fact & mislead her then let her love you and make that decision. If want more info on the fertility part of things visit Julies site. She & her husband (he has CF) went thru the procedures & now have adorable triplets.

Here is the link:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismaleinfertility.com/
">http://www.cysticfibrosismaleinfertility.com/
</a>

Good Luck!
 

InTheZone

New member
Thanks Jazzysmom, I really appreciate it. I am actually really, really scared. She means the world to me and I want to do the right thing by her. I was thinking that maybe it would nto be fair on her or the kid (s) as I might not be around long enough to really see them grow up. TBH she has a histotory of Polycyctic Ovaries in her family so she might not be able to concieve. We should get checked I suppose. Thanks again.
 

InTheZone

New member
Thanks Jazzysmom, I really appreciate it. I am actually really, really scared. She means the world to me and I want to do the right thing by her. I was thinking that maybe it would nto be fair on her or the kid (s) as I might not be around long enough to really see them grow up. TBH she has a histotory of Polycyctic Ovaries in her family so she might not be able to concieve. We should get checked I suppose. Thanks again.
 

InTheZone

New member
Thanks Jazzysmom, I really appreciate it. I am actually really, really scared. She means the world to me and I want to do the right thing by her. I was thinking that maybe it would nto be fair on her or the kid (s) as I might not be around long enough to really see them grow up. TBH she has a histotory of Polycyctic Ovaries in her family so she might not be able to concieve. We should get checked I suppose. Thanks again.
 

InTheZone

New member
Thanks Jazzysmom, I really appreciate it. I am actually really, really scared. She means the world to me and I want to do the right thing by her. I was thinking that maybe it would nto be fair on her or the kid (s) as I might not be around long enough to really see them grow up. TBH she has a histotory of Polycyctic Ovaries in her family so she might not be able to concieve. We should get checked I suppose. Thanks again.
 

InTheZone

New member
Thanks Jazzysmom, I really appreciate it. I am actually really, really scared. She means the world to me and I want to do the right thing by her. I was thinking that maybe it would nto be fair on her or the kid (s) as I might not be around long enough to really see them grow up. TBH she has a histotory of Polycyctic Ovaries in her family so she might not be able to concieve. We should get checked I suppose. Thanks again.
 

InTheZone

New member
Thanks Jazzysmom, I really appreciate it. I am actually really, really scared. She means the world to me and I want to do the right thing by her. I was thinking that maybe it would nto be fair on her or the kid (s) as I might not be around long enough to really see them grow up. TBH she has a histotory of Polycyctic Ovaries in her family so she might not be able to concieve. We should get checked I suppose. Thanks again.
 

DarbSkull

New member
If you have made it to 28 without too many problems, you should be able to live to a ripe old age with aggressive treatment of your CF. I myself wasn't diagnosed until I was 29, and by that time my FEV1 was 81%. It's has varied with the different doctors I've seen, but my latest test a month ago it was 79%. My current doctor that I've been seeing for about 2.5 years is extremely aggressive and has me feeling better than I have since way before I was diagnosed. Of course, it is a pretty big commitment doing what needs to be done (nebs, physio, IVs) but you're worth it and you're family is worth it.
 

DarbSkull

New member
If you have made it to 28 without too many problems, you should be able to live to a ripe old age with aggressive treatment of your CF. I myself wasn't diagnosed until I was 29, and by that time my FEV1 was 81%. It's has varied with the different doctors I've seen, but my latest test a month ago it was 79%. My current doctor that I've been seeing for about 2.5 years is extremely aggressive and has me feeling better than I have since way before I was diagnosed. Of course, it is a pretty big commitment doing what needs to be done (nebs, physio, IVs) but you're worth it and you're family is worth it.
 
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