Optimism...

M

mneville

Guest
For those with young CFers, we were just told this week by our CF doctor that they (our center and others throughout) are now looking at CF as a chronic, manageable disease and not a "fatal" disease.This generation of CFers are benefitting from great therapies very early on. They fully expect Aidan (2 and a half) to live a long life.

This was also said by Dr Warwick when we saw him last summer. Yes, there will be bumps in the road. But now things are being treated sooner and better and we should expect a long life for Aidan. Warwick (one of best CF docs in country) downplayed CF and told us that the diabetes was more of a threat. DO your therpies early on, treat infections aggressively and let Aidan live a normal life was his advice.

Some older CFers didn't benefit from these new therapies from an early age and therefore don't know the difference it could have made. I know that my son is not given a grim prospect at all so I just want other families of young kids to hear that. Yes we treat CF seriously and treat Aidan with the best therapies. But it is not all doom and gloom..

Megan
 
M

mneville

Guest
For those with young CFers, we were just told this week by our CF doctor that they (our center and others throughout) are now looking at CF as a chronic, manageable disease and not a "fatal" disease.This generation of CFers are benefitting from great therapies very early on. They fully expect Aidan (2 and a half) to live a long life.

This was also said by Dr Warwick when we saw him last summer. Yes, there will be bumps in the road. But now things are being treated sooner and better and we should expect a long life for Aidan. Warwick (one of best CF docs in country) downplayed CF and told us that the diabetes was more of a threat. DO your therpies early on, treat infections aggressively and let Aidan live a normal life was his advice.

Some older CFers didn't benefit from these new therapies from an early age and therefore don't know the difference it could have made. I know that my son is not given a grim prospect at all so I just want other families of young kids to hear that. Yes we treat CF seriously and treat Aidan with the best therapies. But it is not all doom and gloom..

Megan
 
M

mneville

Guest
For those with young CFers, we were just told this week by our CF doctor that they (our center and others throughout) are now looking at CF as a chronic, manageable disease and not a "fatal" disease.This generation of CFers are benefitting from great therapies very early on. They fully expect Aidan (2 and a half) to live a long life.

This was also said by Dr Warwick when we saw him last summer. Yes, there will be bumps in the road. But now things are being treated sooner and better and we should expect a long life for Aidan. Warwick (one of best CF docs in country) downplayed CF and told us that the diabetes was more of a threat. DO your therpies early on, treat infections aggressively and let Aidan live a normal life was his advice.

Some older CFers didn't benefit from these new therapies from an early age and therefore don't know the difference it could have made. I know that my son is not given a grim prospect at all so I just want other families of young kids to hear that. Yes we treat CF seriously and treat Aidan with the best therapies. But it is not all doom and gloom..

Megan
 
M

mneville

Guest
For those with young CFers, we were just told this week by our CF doctor that they (our center and others throughout) are now looking at CF as a chronic, manageable disease and not a "fatal" disease.This generation of CFers are benefitting from great therapies very early on. They fully expect Aidan (2 and a half) to live a long life.

This was also said by Dr Warwick when we saw him last summer. Yes, there will be bumps in the road. But now things are being treated sooner and better and we should expect a long life for Aidan. Warwick (one of best CF docs in country) downplayed CF and told us that the diabetes was more of a threat. DO your therpies early on, treat infections aggressively and let Aidan live a normal life was his advice.

Some older CFers didn't benefit from these new therapies from an early age and therefore don't know the difference it could have made. I know that my son is not given a grim prospect at all so I just want other families of young kids to hear that. Yes we treat CF seriously and treat Aidan with the best therapies. But it is not all doom and gloom..

Megan
 
M

mneville

Guest
For those with young CFers, we were just told this week by our CF doctor that they (our center and others throughout) are now looking at CF as a chronic, manageable disease and not a "fatal" disease.This generation of CFers are benefitting from great therapies very early on. They fully expect Aidan (2 and a half) to live a long life.

This was also said by Dr Warwick when we saw him last summer. Yes, there will be bumps in the road. But now things are being treated sooner and better and we should expect a long life for Aidan. Warwick (one of best CF docs in country) downplayed CF and told us that the diabetes was more of a threat. DO your therpies early on, treat infections aggressively and let Aidan live a normal life was his advice.

Some older CFers didn't benefit from these new therapies from an early age and therefore don't know the difference it could have made. I know that my son is not given a grim prospect at all so I just want other families of young kids to hear that. Yes we treat CF seriously and treat Aidan with the best therapies. But it is not all doom and gloom..

Megan
 
M

mneville

Guest
For those with young CFers, we were just told this week by our CF doctor that they (our center and others throughout) are now looking at CF as a chronic, manageable disease and not a "fatal" disease.This generation of CFers are benefitting from great therapies very early on. They fully expect Aidan (2 and a half) to live a long life.

This was also said by Dr Warwick when we saw him last summer. Yes, there will be bumps in the road. But now things are being treated sooner and better and we should expect a long life for Aidan. Warwick (one of best CF docs in country) downplayed CF and told us that the diabetes was more of a threat. DO your therpies early on, treat infections aggressively and let Aidan live a normal life was his advice.

Some older CFers didn't benefit from these new therapies from an early age and therefore don't know the difference it could have made. I know that my son is not given a grim prospect at all so I just want other families of young kids to hear that. Yes we treat CF seriously and treat Aidan with the best therapies. But it is not all doom and gloom..

Megan
 
M

Mommafirst

Guest
Thanks for posting this Megan. I struggle with this a lot. I soooo want to believe all this optimism. I hear it and it makes me feel much better, but then I see how awful this disease could be, and I am afraid to be too relaxed. Afraid that if I don't keep my guard up to CF, CF will blindside me (us).

I do believe in my heart, that if we are compliant and do all the treatments we will entend our children's lives. But then I see a patient (like Colleen) that is in their teens and dies even though they have been compliant since childhood, and I doubt again this belief.

I'd like to chat about this and see the responses.

I agree that its important for those in the newly daignosed situation have lots of hope -- we all have to hang onto that hope -- so I'm not trying at all to shoot down the optimism, but sharing that I struggle between the optimism and the pessimism. I'm guessing the reality is somewhere in between.
 
M

Mommafirst

Guest
Thanks for posting this Megan. I struggle with this a lot. I soooo want to believe all this optimism. I hear it and it makes me feel much better, but then I see how awful this disease could be, and I am afraid to be too relaxed. Afraid that if I don't keep my guard up to CF, CF will blindside me (us).

I do believe in my heart, that if we are compliant and do all the treatments we will entend our children's lives. But then I see a patient (like Colleen) that is in their teens and dies even though they have been compliant since childhood, and I doubt again this belief.

I'd like to chat about this and see the responses.

I agree that its important for those in the newly daignosed situation have lots of hope -- we all have to hang onto that hope -- so I'm not trying at all to shoot down the optimism, but sharing that I struggle between the optimism and the pessimism. I'm guessing the reality is somewhere in between.
 
M

Mommafirst

Guest
Thanks for posting this Megan. I struggle with this a lot. I soooo want to believe all this optimism. I hear it and it makes me feel much better, but then I see how awful this disease could be, and I am afraid to be too relaxed. Afraid that if I don't keep my guard up to CF, CF will blindside me (us).

I do believe in my heart, that if we are compliant and do all the treatments we will entend our children's lives. But then I see a patient (like Colleen) that is in their teens and dies even though they have been compliant since childhood, and I doubt again this belief.

I'd like to chat about this and see the responses.

I agree that its important for those in the newly daignosed situation have lots of hope -- we all have to hang onto that hope -- so I'm not trying at all to shoot down the optimism, but sharing that I struggle between the optimism and the pessimism. I'm guessing the reality is somewhere in between.
 
M

Mommafirst

Guest
Thanks for posting this Megan. I struggle with this a lot. I soooo want to believe all this optimism. I hear it and it makes me feel much better, but then I see how awful this disease could be, and I am afraid to be too relaxed. Afraid that if I don't keep my guard up to CF, CF will blindside me (us).

I do believe in my heart, that if we are compliant and do all the treatments we will entend our children's lives. But then I see a patient (like Colleen) that is in their teens and dies even though they have been compliant since childhood, and I doubt again this belief.

I'd like to chat about this and see the responses.

I agree that its important for those in the newly daignosed situation have lots of hope -- we all have to hang onto that hope -- so I'm not trying at all to shoot down the optimism, but sharing that I struggle between the optimism and the pessimism. I'm guessing the reality is somewhere in between.
 
M

Mommafirst

Guest
Thanks for posting this Megan. I struggle with this a lot. I soooo want to believe all this optimism. I hear it and it makes me feel much better, but then I see how awful this disease could be, and I am afraid to be too relaxed. Afraid that if I don't keep my guard up to CF, CF will blindside me (us).

I do believe in my heart, that if we are compliant and do all the treatments we will entend our children's lives. But then I see a patient (like Colleen) that is in their teens and dies even though they have been compliant since childhood, and I doubt again this belief.

I'd like to chat about this and see the responses.

I agree that its important for those in the newly daignosed situation have lots of hope -- we all have to hang onto that hope -- so I'm not trying at all to shoot down the optimism, but sharing that I struggle between the optimism and the pessimism. I'm guessing the reality is somewhere in between.
 
M

Mommafirst

Guest
Thanks for posting this Megan. I struggle with this a lot. I soooo want to believe all this optimism. I hear it and it makes me feel much better, but then I see how awful this disease could be, and I am afraid to be too relaxed. Afraid that if I don't keep my guard up to CF, CF will blindside me (us).

I do believe in my heart, that if we are compliant and do all the treatments we will entend our children's lives. But then I see a patient (like Colleen) that is in their teens and dies even though they have been compliant since childhood, and I doubt again this belief.

I'd like to chat about this and see the responses.

I agree that its important for those in the newly daignosed situation have lots of hope -- we all have to hang onto that hope -- so I'm not trying at all to shoot down the optimism, but sharing that I struggle between the optimism and the pessimism. I'm guessing the reality is somewhere in between.
 
M

mneville

Guest
Heather- I totally agree. And I asked Warwick about that- how some Cfers do all the treatments and still get very sick. He responded that some kids without CF get sick alot and do poorly. It's more than CF that makes a person more prone to illness ect..genetics of other sorts.

If 50% are now living to 36, that is 36 years ago before many of the good treatments were even available

Aidan has had a PICC, he's had a lung infection ect...but they have been treated and he has no damage from them. I just choose to treat CF with the respect it deserves but am so optimistic about his future. Again- as parents of little ones, we are being told VERY different things than those from even 10 years ago. On Aidan's diagnosis day, they said there would be bumps in the road(which there have) but he will live a full and normal life with proper treatment. And he will.

Megan
 
M

mneville

Guest
Heather- I totally agree. And I asked Warwick about that- how some Cfers do all the treatments and still get very sick. He responded that some kids without CF get sick alot and do poorly. It's more than CF that makes a person more prone to illness ect..genetics of other sorts.

If 50% are now living to 36, that is 36 years ago before many of the good treatments were even available

Aidan has had a PICC, he's had a lung infection ect...but they have been treated and he has no damage from them. I just choose to treat CF with the respect it deserves but am so optimistic about his future. Again- as parents of little ones, we are being told VERY different things than those from even 10 years ago. On Aidan's diagnosis day, they said there would be bumps in the road(which there have) but he will live a full and normal life with proper treatment. And he will.

Megan
 
M

mneville

Guest
Heather- I totally agree. And I asked Warwick about that- how some Cfers do all the treatments and still get very sick. He responded that some kids without CF get sick alot and do poorly. It's more than CF that makes a person more prone to illness ect..genetics of other sorts.

If 50% are now living to 36, that is 36 years ago before many of the good treatments were even available

Aidan has had a PICC, he's had a lung infection ect...but they have been treated and he has no damage from them. I just choose to treat CF with the respect it deserves but am so optimistic about his future. Again- as parents of little ones, we are being told VERY different things than those from even 10 years ago. On Aidan's diagnosis day, they said there would be bumps in the road(which there have) but he will live a full and normal life with proper treatment. And he will.

Megan
 
M

mneville

Guest
Heather- I totally agree. And I asked Warwick about that- how some Cfers do all the treatments and still get very sick. He responded that some kids without CF get sick alot and do poorly. It's more than CF that makes a person more prone to illness ect..genetics of other sorts.

If 50% are now living to 36, that is 36 years ago before many of the good treatments were even available

Aidan has had a PICC, he's had a lung infection ect...but they have been treated and he has no damage from them. I just choose to treat CF with the respect it deserves but am so optimistic about his future. Again- as parents of little ones, we are being told VERY different things than those from even 10 years ago. On Aidan's diagnosis day, they said there would be bumps in the road(which there have) but he will live a full and normal life with proper treatment. And he will.

Megan
 
M

mneville

Guest
Heather- I totally agree. And I asked Warwick about that- how some Cfers do all the treatments and still get very sick. He responded that some kids without CF get sick alot and do poorly. It's more than CF that makes a person more prone to illness ect..genetics of other sorts.

If 50% are now living to 36, that is 36 years ago before many of the good treatments were even available

Aidan has had a PICC, he's had a lung infection ect...but they have been treated and he has no damage from them. I just choose to treat CF with the respect it deserves but am so optimistic about his future. Again- as parents of little ones, we are being told VERY different things than those from even 10 years ago. On Aidan's diagnosis day, they said there would be bumps in the road(which there have) but he will live a full and normal life with proper treatment. And he will.

Megan
 
M

mneville

Guest
Heather- I totally agree. And I asked Warwick about that- how some Cfers do all the treatments and still get very sick. He responded that some kids without CF get sick alot and do poorly. It's more than CF that makes a person more prone to illness ect..genetics of other sorts.

If 50% are now living to 36, that is 36 years ago before many of the good treatments were even available

Aidan has had a PICC, he's had a lung infection ect...but they have been treated and he has no damage from them. I just choose to treat CF with the respect it deserves but am so optimistic about his future. Again- as parents of little ones, we are being told VERY different things than those from even 10 years ago. On Aidan's diagnosis day, they said there would be bumps in the road(which there have) but he will live a full and normal life with proper treatment. And he will.

Megan
 
A

AlexsMom

New member
Thnak-you for that optimistic outlook, that really helped me tonight-my daughter is not yet diagnosed, but we are in that possible process now and initial feelings of dread came over me at the thought of her having CF- all based on what I had read and seen in the past.- I have brought myself up todate and have seen the great progress made in treating this disease. Thank-you again. Kelly
 
A

AlexsMom

New member
Thnak-you for that optimistic outlook, that really helped me tonight-my daughter is not yet diagnosed, but we are in that possible process now and initial feelings of dread came over me at the thought of her having CF- all based on what I had read and seen in the past.- I have brought myself up todate and have seen the great progress made in treating this disease. Thank-you again. Kelly
 
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