Scared

N

neptuneslily

New member
So I went to the Dr. today, and found out that I need to be tested for CF. All signs point to adult onset CF, but Lupus testing and a CF test are next. I go on Aug. 4th for the rest of my testing. So I came home, knowing very little about CF, and got online. Now I am really scared. I am 30, and read that most are diagnosed as children with a average life expectancy of 37. I am a mom of a 5 yr old who has an immune deficiency, and now I am concerned about his health again too.

I am really just wanting to know what to expect in the days, weeks, months to come. What can I expect from the CF testing? If I have CF does my son have it too? How did I make it to 30 with out ever hearing this before? Is it possible for it to just start causing real issues at this age? I had always been told I had allergy and now I am being told that it may never have been allergies. Any idea of what is to come would be great!

Thank you!
 
N

neptuneslily

New member
So I went to the Dr. today, and found out that I need to be tested for CF. All signs point to adult onset CF, but Lupus testing and a CF test are next. I go on Aug. 4th for the rest of my testing. So I came home, knowing very little about CF, and got online. Now I am really scared. I am 30, and read that most are diagnosed as children with a average life expectancy of 37. I am a mom of a 5 yr old who has an immune deficiency, and now I am concerned about his health again too.

I am really just wanting to know what to expect in the days, weeks, months to come. What can I expect from the CF testing? If I have CF does my son have it too? How did I make it to 30 with out ever hearing this before? Is it possible for it to just start causing real issues at this age? I had always been told I had allergy and now I am being told that it may never have been allergies. Any idea of what is to come would be great!

Thank you!
 
N

neptuneslily

New member
So I went to the Dr. today, and found out that I need to be tested for CF. All signs point to adult onset CF, but Lupus testing and a CF test are next. I go on Aug. 4th for the rest of my testing. So I came home, knowing very little about CF, and got online. Now I am really scared. I am 30, and read that most are diagnosed as children with a average life expectancy of 37. I am a mom of a 5 yr old who has an immune deficiency, and now I am concerned about his health again too.

I am really just wanting to know what to expect in the days, weeks, months to come. What can I expect from the CF testing? If I have CF does my son have it too? How did I make it to 30 with out ever hearing this before? Is it possible for it to just start causing real issues at this age? I had always been told I had allergy and now I am being told that it may never have been allergies. Any idea of what is to come would be great!

Thank you!
 
N

neptuneslily

New member
So I went to the Dr. today, and found out that I need to be tested for CF. All signs point to adult onset CF, but Lupus testing and a CF test are next. I go on Aug. 4th for the rest of my testing. So I came home, knowing very little about CF, and got online. Now I am really scared. I am 30, and read that most are diagnosed as children with a average life expectancy of 37. I am a mom of a 5 yr old who has an immune deficiency, and now I am concerned about his health again too.

I am really just wanting to know what to expect in the days, weeks, months to come. What can I expect from the CF testing? If I have CF does my son have it too? How did I make it to 30 with out ever hearing this before? Is it possible for it to just start causing real issues at this age? I had always been told I had allergy and now I am being told that it may never have been allergies. Any idea of what is to come would be great!

Thank you!
 
N

neptuneslily

New member
So I went to the Dr. today, and found out that I need to be tested for CF. All signs point to adult onset CF, but Lupus testing and a CF test are next. I go on Aug. 4th for the rest of my testing. So I came home, knowing very little about CF, and got online. Now I am really scared. I am 30, and read that most are diagnosed as children with a average life expectancy of 37. I am a mom of a 5 yr old who has an immune deficiency, and now I am concerned about his health again too.
<br />
<br />I am really just wanting to know what to expect in the days, weeks, months to come. What can I expect from the CF testing? If I have CF does my son have it too? How did I make it to 30 with out ever hearing this before? Is it possible for it to just start causing real issues at this age? I had always been told I had allergy and now I am being told that it may never have been allergies. Any idea of what is to come would be great!
<br />
<br />Thank you!
 
W

welshwitch

Guest
Hello! Welcome!

Totally understandable that you are scared.

I was diagnosed as a baby, but tons of people on this site were diagnosed as adults. Some people's condition just doesn't manifest itself until you hit a certain age.

Despite living with it my whole life, I myself am still getting "used" to it....I'm 29 and going to be 30 in a couple months....despite all the stuff about life expectancy, symptoms, hospital visits, IVs etc, I have been lucky in my experience and haven't yet had to deal with most of these issues.

However, whatever stage your CF is at doesn't discount the need to be proactive in taking care of yourself! One of the nice things I have discovered in recent years is that you still have control over a lot of your health. If it turns out that you DO have CF, there are a ton of medications and airway clearance techniques that you can do to help yourself. It will be a lifestyle change, but when you look at the big picture it will hopefully just be another new (and perhaps scary) routine.

I am by no means "comfortable" in my CF skin but I have had quite a bit of time to analyze (perhaps overly?) about what CF means to me and how I am going to handle it going forward (with respect to career, marriage, kids, finances, etc. etc. etc.) but I am just taking it a day at a time.

Good luck to you! Feel free to message me any specific questions.
 
W

welshwitch

Guest
Hello! Welcome!

Totally understandable that you are scared.

I was diagnosed as a baby, but tons of people on this site were diagnosed as adults. Some people's condition just doesn't manifest itself until you hit a certain age.

Despite living with it my whole life, I myself am still getting "used" to it....I'm 29 and going to be 30 in a couple months....despite all the stuff about life expectancy, symptoms, hospital visits, IVs etc, I have been lucky in my experience and haven't yet had to deal with most of these issues.

However, whatever stage your CF is at doesn't discount the need to be proactive in taking care of yourself! One of the nice things I have discovered in recent years is that you still have control over a lot of your health. If it turns out that you DO have CF, there are a ton of medications and airway clearance techniques that you can do to help yourself. It will be a lifestyle change, but when you look at the big picture it will hopefully just be another new (and perhaps scary) routine.

I am by no means "comfortable" in my CF skin but I have had quite a bit of time to analyze (perhaps overly?) about what CF means to me and how I am going to handle it going forward (with respect to career, marriage, kids, finances, etc. etc. etc.) but I am just taking it a day at a time.

Good luck to you! Feel free to message me any specific questions.
 
W

welshwitch

Guest
Hello! Welcome!

Totally understandable that you are scared.

I was diagnosed as a baby, but tons of people on this site were diagnosed as adults. Some people's condition just doesn't manifest itself until you hit a certain age.

Despite living with it my whole life, I myself am still getting "used" to it....I'm 29 and going to be 30 in a couple months....despite all the stuff about life expectancy, symptoms, hospital visits, IVs etc, I have been lucky in my experience and haven't yet had to deal with most of these issues.

However, whatever stage your CF is at doesn't discount the need to be proactive in taking care of yourself! One of the nice things I have discovered in recent years is that you still have control over a lot of your health. If it turns out that you DO have CF, there are a ton of medications and airway clearance techniques that you can do to help yourself. It will be a lifestyle change, but when you look at the big picture it will hopefully just be another new (and perhaps scary) routine.

I am by no means "comfortable" in my CF skin but I have had quite a bit of time to analyze (perhaps overly?) about what CF means to me and how I am going to handle it going forward (with respect to career, marriage, kids, finances, etc. etc. etc.) but I am just taking it a day at a time.

Good luck to you! Feel free to message me any specific questions.
 
W

welshwitch

Guest
Hello! Welcome!

Totally understandable that you are scared.

I was diagnosed as a baby, but tons of people on this site were diagnosed as adults. Some people's condition just doesn't manifest itself until you hit a certain age.

Despite living with it my whole life, I myself am still getting "used" to it....I'm 29 and going to be 30 in a couple months....despite all the stuff about life expectancy, symptoms, hospital visits, IVs etc, I have been lucky in my experience and haven't yet had to deal with most of these issues.

However, whatever stage your CF is at doesn't discount the need to be proactive in taking care of yourself! One of the nice things I have discovered in recent years is that you still have control over a lot of your health. If it turns out that you DO have CF, there are a ton of medications and airway clearance techniques that you can do to help yourself. It will be a lifestyle change, but when you look at the big picture it will hopefully just be another new (and perhaps scary) routine.

I am by no means "comfortable" in my CF skin but I have had quite a bit of time to analyze (perhaps overly?) about what CF means to me and how I am going to handle it going forward (with respect to career, marriage, kids, finances, etc. etc. etc.) but I am just taking it a day at a time.

Good luck to you! Feel free to message me any specific questions.
 
W

welshwitch

Guest
Hello! Welcome!
<br />
<br />Totally understandable that you are scared.
<br />
<br />I was diagnosed as a baby, but tons of people on this site were diagnosed as adults. Some people's condition just doesn't manifest itself until you hit a certain age.
<br />
<br />Despite living with it my whole life, I myself am still getting "used" to it....I'm 29 and going to be 30 in a couple months....despite all the stuff about life expectancy, symptoms, hospital visits, IVs etc, I have been lucky in my experience and haven't yet had to deal with most of these issues.
<br />
<br />However, whatever stage your CF is at doesn't discount the need to be proactive in taking care of yourself! One of the nice things I have discovered in recent years is that you still have control over a lot of your health. If it turns out that you DO have CF, there are a ton of medications and airway clearance techniques that you can do to help yourself. It will be a lifestyle change, but when you look at the big picture it will hopefully just be another new (and perhaps scary) routine.
<br />
<br />I am by no means "comfortable" in my CF skin but I have had quite a bit of time to analyze (perhaps overly?) about what CF means to me and how I am going to handle it going forward (with respect to career, marriage, kids, finances, etc. etc. etc.) but I am just taking it a day at a time.
<br />
<br />Good luck to you! Feel free to message me any specific questions.
 
W

welshwitch

Guest
Oh yes, ps. Don't freak out about the stuff you read online--lots of it is outdated BUT also may not apply to you. Work off of the information that you have gotten from your dr. and, most importantly, look to YOURSELF to how you are feeling. Bottom line is, this is YOUR condition and everyone's CF is different with respect to how it plays out.
 
W

welshwitch

Guest
Oh yes, ps. Don't freak out about the stuff you read online--lots of it is outdated BUT also may not apply to you. Work off of the information that you have gotten from your dr. and, most importantly, look to YOURSELF to how you are feeling. Bottom line is, this is YOUR condition and everyone's CF is different with respect to how it plays out.
 
W

welshwitch

Guest
Oh yes, ps. Don't freak out about the stuff you read online--lots of it is outdated BUT also may not apply to you. Work off of the information that you have gotten from your dr. and, most importantly, look to YOURSELF to how you are feeling. Bottom line is, this is YOUR condition and everyone's CF is different with respect to how it plays out.
 
W

welshwitch

Guest
Oh yes, ps. Don't freak out about the stuff you read online--lots of it is outdated BUT also may not apply to you. Work off of the information that you have gotten from your dr. and, most importantly, look to YOURSELF to how you are feeling. Bottom line is, this is YOUR condition and everyone's CF is different with respect to how it plays out.
 
W

welshwitch

Guest
Oh yes, ps. Don't freak out about the stuff you read online--lots of it is outdated BUT also may not apply to you. Work off of the information that you have gotten from your dr. and, most importantly, look to YOURSELF to how you are feeling. Bottom line is, this is YOUR condition and everyone's CF is different with respect to how it plays out.
 
N

neptuneslily

New member
Thank you so much for your reply and very nice words. Finding this forum has helped me weed through a lot of what I read online about CF. What is the diagnosis process like? Is it painful and does it take a lot of testing and time to come to a diagnosis?

Thank you again! It really does mean a lot to me!

Alison
 
N

neptuneslily

New member
Thank you so much for your reply and very nice words. Finding this forum has helped me weed through a lot of what I read online about CF. What is the diagnosis process like? Is it painful and does it take a lot of testing and time to come to a diagnosis?

Thank you again! It really does mean a lot to me!

Alison
 
N

neptuneslily

New member
Thank you so much for your reply and very nice words. Finding this forum has helped me weed through a lot of what I read online about CF. What is the diagnosis process like? Is it painful and does it take a lot of testing and time to come to a diagnosis?

Thank you again! It really does mean a lot to me!

Alison
 
N

neptuneslily

New member
Thank you so much for your reply and very nice words. Finding this forum has helped me weed through a lot of what I read online about CF. What is the diagnosis process like? Is it painful and does it take a lot of testing and time to come to a diagnosis?

Thank you again! It really does mean a lot to me!

Alison
 
N

neptuneslily

New member
Thank you so much for your reply and very nice words. Finding this forum has helped me weed through a lot of what I read online about CF. What is the diagnosis process like? Is it painful and does it take a lot of testing and time to come to a diagnosis?
<br />
<br />Thank you again! It really does mean a lot to me!
<br />
<br />Alison
 
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