A bit depressed

A

ashinhoc

New member
My wife and I recently found out our month old son has CF and we have been researching the internet like crazy to know more about CF, CF support groups for us and him, CF forums and blogs, and any other help we might need.

My issue is this: we are trying to stay positive and thus would like to see positive stories, outlooks, etc but most of the stuff out there are memorials to lost children, stories that only describe the bad stuff going on with themselves or their children, or just negativity that there's no hope. I am new to this and I'm sorry for anyone affected by CF but I want positivity!! I don't want to be praying for IF my child lives past high school (I try to be a realist) because that's all I see on websites.

I am not trying to just rant so I'll ask for advice on where to go for a good blog(s) for information about CF. This forum seems pretty solid that has everything I foreseeably need (support, information, positivity, etc.) and would like to make my home here. Please let me know some more places to check out.
 
A

ashinhoc

New member
My wife and I recently found out our month old son has CF and we have been researching the internet like crazy to know more about CF, CF support groups for us and him, CF forums and blogs, and any other help we might need.

My issue is this: we are trying to stay positive and thus would like to see positive stories, outlooks, etc but most of the stuff out there are memorials to lost children, stories that only describe the bad stuff going on with themselves or their children, or just negativity that there's no hope. I am new to this and I'm sorry for anyone affected by CF but I want positivity!! I don't want to be praying for IF my child lives past high school (I try to be a realist) because that's all I see on websites.

I am not trying to just rant so I'll ask for advice on where to go for a good blog(s) for information about CF. This forum seems pretty solid that has everything I foreseeably need (support, information, positivity, etc.) and would like to make my home here. Please let me know some more places to check out.
 
A

ashinhoc

New member
My wife and I recently found out our month old son has CF and we have been researching the internet like crazy to know more about CF, CF support groups for us and him, CF forums and blogs, and any other help we might need.
<br />
<br />My issue is this: we are trying to stay positive and thus would like to see positive stories, outlooks, etc but most of the stuff out there are memorials to lost children, stories that only describe the bad stuff going on with themselves or their children, or just negativity that there's no hope. I am new to this and I'm sorry for anyone affected by CF but I want positivity!! I don't want to be praying for IF my child lives past high school (I try to be a realist) because that's all I see on websites.
<br />
<br />I am not trying to just rant so I'll ask for advice on where to go for a good blog(s) for information about CF. This forum seems pretty solid that has everything I foreseeably need (support, information, positivity, etc.) and would like to make my home here. Please let me know some more places to check out.
 
W

welshwitch

Guest
Hello!

Congrats on your son!!!

Beware of searching the internet....it contains a TON of outdated info about CF. (This is what I warn people when I tell them about my health situation)

There are plenty of positive CF stories.....like me! I'm 30, work full time, lung function in the 100s, dealing with CF as something I need to deal with (because everyone has "something"), trying not to sugarcoat it, and just living life!

You'll find plenty of people on here with super positive stories. You'll find people with CF who are married, have kids, have full, productive lives. You'll of course also find people whose CF is more severe and unfortunately limits them in certain ways.

One thing to keep in mind is that CF affects everyone a bit differently. Things like modifier genes, access to health care and compliance make a huge difference.

Welcome to the site!
 
W

welshwitch

Guest
Hello!

Congrats on your son!!!

Beware of searching the internet....it contains a TON of outdated info about CF. (This is what I warn people when I tell them about my health situation)

There are plenty of positive CF stories.....like me! I'm 30, work full time, lung function in the 100s, dealing with CF as something I need to deal with (because everyone has "something"), trying not to sugarcoat it, and just living life!

You'll find plenty of people on here with super positive stories. You'll find people with CF who are married, have kids, have full, productive lives. You'll of course also find people whose CF is more severe and unfortunately limits them in certain ways.

One thing to keep in mind is that CF affects everyone a bit differently. Things like modifier genes, access to health care and compliance make a huge difference.

Welcome to the site!
 
W

welshwitch

Guest
Hello!
<br />
<br />Congrats on your son!!!
<br />
<br />Beware of searching the internet....it contains a TON of outdated info about CF. (This is what I warn people when I tell them about my health situation)
<br />
<br />There are plenty of positive CF stories.....like me! I'm 30, work full time, lung function in the 100s, dealing with CF as something I need to deal with (because everyone has "something"), trying not to sugarcoat it, and just living life!
<br />
<br />You'll find plenty of people on here with super positive stories. You'll find people with CF who are married, have kids, have full, productive lives. You'll of course also find people whose CF is more severe and unfortunately limits them in certain ways.
<br />
<br />One thing to keep in mind is that CF affects everyone a bit differently. Things like modifier genes, access to health care and compliance make a huge difference.
<br />
<br />Welcome to the site!
 
H

hmw

New member
Hello and welcome. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm glad that you have found us here... there is a lot of support and information to be found on this site and I hope you find a good 'home' here.

I hope your son is doing well and continues to do very well for a long time to come.

As far as what you are asking for- positivity, etc.

I think there is a lot of positivity to be found out there, but there is also a huge, valid reason for why you also see the 'other' side of cf, the pain and struggles, etc. It's because- there really isn't a delicate way to say it- but this is the reality of life with this disease.

There <i>is</i> hope and much to be positive about with promising treatments on the horizon, increased life expectancies, etc, but it's tempered with a lot of difficult realities as well, and getting a thorough understanding of the disease and coming to terms with it will be very difficult if only looking for positive... since that just leaves a lot of holes. The fact of the matter is, <i>preventative care and aggressive treatment of illness, etc is vital when it comes to cf, and one won't understand the absolute urgency of this if there isn't a real comprehension of the realities of cf, as difficult as those realities are to comprehend.</i> Early on, so soon after dx, this can be really overwhelming though... esp with your baby so young. It can take a while and there certainly is no reason to surround yourselves with stories of death, etc. But there really won't be a realistic place to go where the picture is all positive about CF, since that just isn't how life with this disease will be, unfortunately. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Websites like this are so good- since there are people (parents, adults with cf, etc) from all walks of life and from so many different perspectives that all come together to give each other practical advice and share their own perspectives. You won't find a 'gloom and doom' perspective overwhelming this site at ALL, and for the most part the parents of children with cf have positive outlooks for their children, as do the adults living with the disease (and their experiences are invaluable to me.) But they do share their challenges and struggles along with all the great moments; and this forum definitely represents a slice of life as it is- and on occasion death as it is- in the cf community.

eta> I totally agree with the above post in being careful with what you read online. Be sure what you read is current and from reputable sources... things have come a long way in cf research (and prognosis!)
 
H

hmw

New member
Hello and welcome. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm glad that you have found us here... there is a lot of support and information to be found on this site and I hope you find a good 'home' here.

I hope your son is doing well and continues to do very well for a long time to come.

As far as what you are asking for- positivity, etc.

I think there is a lot of positivity to be found out there, but there is also a huge, valid reason for why you also see the 'other' side of cf, the pain and struggles, etc. It's because- there really isn't a delicate way to say it- but this is the reality of life with this disease.

There <i>is</i> hope and much to be positive about with promising treatments on the horizon, increased life expectancies, etc, but it's tempered with a lot of difficult realities as well, and getting a thorough understanding of the disease and coming to terms with it will be very difficult if only looking for positive... since that just leaves a lot of holes. The fact of the matter is, <i>preventative care and aggressive treatment of illness, etc is vital when it comes to cf, and one won't understand the absolute urgency of this if there isn't a real comprehension of the realities of cf, as difficult as those realities are to comprehend.</i> Early on, so soon after dx, this can be really overwhelming though... esp with your baby so young. It can take a while and there certainly is no reason to surround yourselves with stories of death, etc. But there really won't be a realistic place to go where the picture is all positive about CF, since that just isn't how life with this disease will be, unfortunately. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Websites like this are so good- since there are people (parents, adults with cf, etc) from all walks of life and from so many different perspectives that all come together to give each other practical advice and share their own perspectives. You won't find a 'gloom and doom' perspective overwhelming this site at ALL, and for the most part the parents of children with cf have positive outlooks for their children, as do the adults living with the disease (and their experiences are invaluable to me.) But they do share their challenges and struggles along with all the great moments; and this forum definitely represents a slice of life as it is- and on occasion death as it is- in the cf community.

eta> I totally agree with the above post in being careful with what you read online. Be sure what you read is current and from reputable sources... things have come a long way in cf research (and prognosis!)
 
H

hmw

New member
Hello and welcome. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm glad that you have found us here... there is a lot of support and information to be found on this site and I hope you find a good 'home' here.
<br />
<br />I hope your son is doing well and continues to do very well for a long time to come.
<br />
<br />As far as what you are asking for- positivity, etc.
<br />
<br />I think there is a lot of positivity to be found out there, but there is also a huge, valid reason for why you also see the 'other' side of cf, the pain and struggles, etc. It's because- there really isn't a delicate way to say it- but this is the reality of life with this disease.
<br />
<br />There <i>is</i> hope and much to be positive about with promising treatments on the horizon, increased life expectancies, etc, but it's tempered with a lot of difficult realities as well, and getting a thorough understanding of the disease and coming to terms with it will be very difficult if only looking for positive... since that just leaves a lot of holes. The fact of the matter is, <i>preventative care and aggressive treatment of illness, etc is vital when it comes to cf, and one won't understand the absolute urgency of this if there isn't a real comprehension of the realities of cf, as difficult as those realities are to comprehend.</i> Early on, so soon after dx, this can be really overwhelming though... esp with your baby so young. It can take a while and there certainly is no reason to surround yourselves with stories of death, etc. But there really won't be a realistic place to go where the picture is all positive about CF, since that just isn't how life with this disease will be, unfortunately. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />Websites like this are so good- since there are people (parents, adults with cf, etc) from all walks of life and from so many different perspectives that all come together to give each other practical advice and share their own perspectives. You won't find a 'gloom and doom' perspective overwhelming this site at ALL, and for the most part the parents of children with cf have positive outlooks for their children, as do the adults living with the disease (and their experiences are invaluable to me.) But they do share their challenges and struggles along with all the great moments; and this forum definitely represents a slice of life as it is- and on occasion death as it is- in the cf community.
<br />
<br />eta> I totally agree with the above post in being careful with what you read online. Be sure what you read is current and from reputable sources... things have come a long way in cf research (and prognosis!)
 
R

Ratatosk

Administrator
Staff member
When DS was diagnosed shortly after he was born, one of DH's concerns was that DS would be the sickly child who was always left out, who nobody would play with. Our doctor had a young lady come down from the CF floor and we were shocked because she was a normal, healthy looking teenager.

The doctor stressed being proactive and WARNED us not to go looking up stuff on cf as a lot of that info is outdated. Told us our child would be normal, just needed a few extra little things -- CPT, enzymes to keep him happy and healthy.

When we got home from the NICU, a couple ladies whose college aged sons had CF called me and really freaked me out. They told me how sick their children were as babies. Of course they hadn't been diagnoed right away, but all I could thing about was after spending a month and a half in the NICU, and being a brand new mom I was terrified.

At 3 months old, DS went to daycare, and I went back to work full time. And other than a couple ear infections, DS was probably one of the healthiest children at daycare and this continued thru his preschool years.

Today he's a busy 7 year old. Active in sports, has lots of friends. Check out my blog on the sidebar.

Please feel free to ask any questions. And ENJOY your child. Remember he's still a normal baby, who just happens to need a few things to keep him healthy.
 
R

Ratatosk

Administrator
Staff member
When DS was diagnosed shortly after he was born, one of DH's concerns was that DS would be the sickly child who was always left out, who nobody would play with. Our doctor had a young lady come down from the CF floor and we were shocked because she was a normal, healthy looking teenager.

The doctor stressed being proactive and WARNED us not to go looking up stuff on cf as a lot of that info is outdated. Told us our child would be normal, just needed a few extra little things -- CPT, enzymes to keep him happy and healthy.

When we got home from the NICU, a couple ladies whose college aged sons had CF called me and really freaked me out. They told me how sick their children were as babies. Of course they hadn't been diagnoed right away, but all I could thing about was after spending a month and a half in the NICU, and being a brand new mom I was terrified.

At 3 months old, DS went to daycare, and I went back to work full time. And other than a couple ear infections, DS was probably one of the healthiest children at daycare and this continued thru his preschool years.

Today he's a busy 7 year old. Active in sports, has lots of friends. Check out my blog on the sidebar.

Please feel free to ask any questions. And ENJOY your child. Remember he's still a normal baby, who just happens to need a few things to keep him healthy.
 
R

Ratatosk

Administrator
Staff member
When DS was diagnosed shortly after he was born, one of DH's concerns was that DS would be the sickly child who was always left out, who nobody would play with. Our doctor had a young lady come down from the CF floor and we were shocked because she was a normal, healthy looking teenager.
<br />
<br />The doctor stressed being proactive and WARNED us not to go looking up stuff on cf as a lot of that info is outdated. Told us our child would be normal, just needed a few extra little things -- CPT, enzymes to keep him happy and healthy.
<br />
<br />When we got home from the NICU, a couple ladies whose college aged sons had CF called me and really freaked me out. They told me how sick their children were as babies. Of course they hadn't been diagnoed right away, but all I could thing about was after spending a month and a half in the NICU, and being a brand new mom I was terrified.
<br />
<br />At 3 months old, DS went to daycare, and I went back to work full time. And other than a couple ear infections, DS was probably one of the healthiest children at daycare and this continued thru his preschool years.
<br />
<br />Today he's a busy 7 year old. Active in sports, has lots of friends. Check out my blog on the sidebar.
<br />
<br />Please feel free to ask any questions. And ENJOY your child. Remember he's still a normal baby, who just happens to need a few things to keep him healthy.
 
P

petnurse

New member
I agree with everyone else. My son was diagnosed at 3 weeks and you would never know it! Even his medications are minimal. Being diagnosed at such a young age is a huge step for CF and does wonders for their health. For me, we knew our son may possibly have CF (thanks to prenantal screens),, so we were a little more prepared than some. We never went through the "shock" state. Just straight to depressed, then denial, then anger. Now we are fighting! Good luck and feel free to message me if you would like. My son is only 13 months old so it has not been that long ago that I was in your shoes !
 
P

petnurse

New member
I agree with everyone else. My son was diagnosed at 3 weeks and you would never know it! Even his medications are minimal. Being diagnosed at such a young age is a huge step for CF and does wonders for their health. For me, we knew our son may possibly have CF (thanks to prenantal screens),, so we were a little more prepared than some. We never went through the "shock" state. Just straight to depressed, then denial, then anger. Now we are fighting! Good luck and feel free to message me if you would like. My son is only 13 months old so it has not been that long ago that I was in your shoes !
 
P

petnurse

New member
I agree with everyone else. My son was diagnosed at 3 weeks and you would never know it! Even his medications are minimal. Being diagnosed at such a young age is a huge step for CF and does wonders for their health. For me, we knew our son may possibly have CF (thanks to prenantal screens),, so we were a little more prepared than some. We never went through the "shock" state. Just straight to depressed, then denial, then anger. Now we are fighting! Good luck and feel free to message me if you would like. My son is only 13 months old so it has not been that long ago that I was in your shoes !
 
F

falloutboygurl16

New member
i know trying to be positive is sooo difficult and sometimes impossible. i was diagnosed at a year old in 1990. i was born in '89. like everyone else said being diagnosed at a young age is definately good for health. really as a child i was hospitalized once when i was 5. i wasnt hospitalized again until i was 15 i think?? and then my o2 sats were 72 and my pfts were in the 20s. i was 72 lbs and i was suuuuper sick thanks to a poor dr. they thought i was going to die. but i changed dr.s and now my pfts are at 80 percent. so that all goes to show that things can get better even when they seem hopeless. its all a matter of care. sometimes things happen that we have no control over and cf is one of them. i know im going to be old and grow old because thats what i believe and thats how i feel. optimism is always something to look at. having this disease makes you appreciate a lot more in life and it makes you want to spend every day like its your last..it may be a "curse" but i look at it as a blessing as well.
 
F

falloutboygurl16

New member
i know trying to be positive is sooo difficult and sometimes impossible. i was diagnosed at a year old in 1990. i was born in '89. like everyone else said being diagnosed at a young age is definately good for health. really as a child i was hospitalized once when i was 5. i wasnt hospitalized again until i was 15 i think?? and then my o2 sats were 72 and my pfts were in the 20s. i was 72 lbs and i was suuuuper sick thanks to a poor dr. they thought i was going to die. but i changed dr.s and now my pfts are at 80 percent. so that all goes to show that things can get better even when they seem hopeless. its all a matter of care. sometimes things happen that we have no control over and cf is one of them. i know im going to be old and grow old because thats what i believe and thats how i feel. optimism is always something to look at. having this disease makes you appreciate a lot more in life and it makes you want to spend every day like its your last..it may be a "curse" but i look at it as a blessing as well.
 
F

falloutboygurl16

New member
i know trying to be positive is sooo difficult and sometimes impossible. i was diagnosed at a year old in 1990. i was born in '89. like everyone else said being diagnosed at a young age is definately good for health. really as a child i was hospitalized once when i was 5. i wasnt hospitalized again until i was 15 i think?? and then my o2 sats were 72 and my pfts were in the 20s. i was 72 lbs and i was suuuuper sick thanks to a poor dr. they thought i was going to die. but i changed dr.s and now my pfts are at 80 percent. so that all goes to show that things can get better even when they seem hopeless. its all a matter of care. sometimes things happen that we have no control over and cf is one of them. i know im going to be old and grow old because thats what i believe and thats how i feel. optimism is always something to look at. having this disease makes you appreciate a lot more in life and it makes you want to spend every day like its your last..it may be a "curse" but i look at it as a blessing as well.
 
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