Re: I'm shaking my head as to what subject to call this!

[Guest guest]

Cheryl,

I am not the mom of a CF child, but I am the one with CF. But I have asked my

parents over the years how they dealt with it all. I know that I was never

aware that they were upset or concerned about my sister and I, who both have

CF. I am 39 now and my sister is 48. I know my sister and I showed no

signs of CF for many years, but they did the enzymes and the treatments and

maybe that was the key to keeping it from making havoc with our lungs. I

know when I was a teenager, and I would cough more, but still felt very

healthy, I protested when the doctor would say I had to do the chest

physiotherapy. But we did it and I think it did help me from getting colds

to go into my lungs. My parents say that they believed the docs, but back

when I was diagnosed, things were still new on CF and no support like there

is now through the wonders of email. They relyed on reading articles, and

books and talking to our doctor. My dad did research into the cure of CF. He

was positive he would find the cure through is research he did every night in

our basement. My sister and I had no idea he did research into it. He had

many great ideas. Who knows, maybe he did find a cure, but it sits among his

papers now. My sister and I were diagnosed in 1969. I was 4 and my sister was

14.

Your son will surprise you with his fight and determination. I tell many

parents that yes their child get the CF gene, but I think we get another

" fighting, determined " gene that no one else gets and we get far on that. So

hang in there, your son will be the best thing to happen to you and your

family. Hope he is doing great today.

Joanne Schum

luckylungsforjo@...

>

>

> Hi All,

>

> I just have to let out my feelings again regarding my son's diagnosis. Can

> any of you out there give me your story? Did you think in the beginning it

> was a mistake? Maybe like me, your child didn't present with any

> problems/symptoms? My mother keeps telling me that I should be happy and

> grateful. I know that but its just so hard to accept when he is doing so

> well. Can they ever make a mistake? Is that so wrong of me to hope for

> that? I still continue with everything I have to do, meds, enzymes,

> therapy, etc. Maybe that is why he is doing so well.

>

> These past 9 months still feel like a nightmare that I am waiting to wake

> up from. Unfortunately, I've been awake the whole darn time!!!

>

> I have stopped nursing, it has been almost a month now. Do you think that

> might make him start presenting with some symptoms? He is on whole milk,

> and has had no problems.

>

> Sorry for my emotions, just can't seem to get my head around all this.

>

> Any advice, comments etc. are appreciated.

>

> Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2 yrs. wocf, Matty 9 mo. wcf

[Guest guest]

Cheryl,

I am not the mom of a CF child, but I am the one with CF. But I have asked my

parents over the years how they dealt with it all. I know that I was never

aware that they were upset or concerned about my sister and I, who both have

CF. I am 39 now and my sister is 48. I know my sister and I showed no

signs of CF for many years, but they did the enzymes and the treatments and

maybe that was the key to keeping it from making havoc with our lungs. I

know when I was a teenager, and I would cough more, but still felt very

healthy, I protested when the doctor would say I had to do the chest

physiotherapy. But we did it and I think it did help me from getting colds

to go into my lungs. My parents say that they believed the docs, but back

when I was diagnosed, things were still new on CF and no support like there

is now through the wonders of email. They relyed on reading articles, and

books and talking to our doctor. My dad did research into the cure of CF. He

was positive he would find the cure through is research he did every night in

our basement. My sister and I had no idea he did research into it. He had

many great ideas. Who knows, maybe he did find a cure, but it sits among his

papers now. My sister and I were diagnosed in 1969. I was 4 and my sister was

14.

Your son will surprise you with his fight and determination. I tell many

parents that yes their child get the CF gene, but I think we get another

" fighting, determined " gene that no one else gets and we get far on that. So

hang in there, your son will be the best thing to happen to you and your

family. Hope he is doing great today.

Joanne Schum

luckylungsforjo@...

>

>

> Hi All,

>

> I just have to let out my feelings again regarding my son's diagnosis. Can

> any of you out there give me your story? Did you think in the beginning it

> was a mistake? Maybe like me, your child didn't present with any

> problems/symptoms? My mother keeps telling me that I should be happy and

> grateful. I know that but its just so hard to accept when he is doing so

> well. Can they ever make a mistake? Is that so wrong of me to hope for

> that? I still continue with everything I have to do, meds, enzymes,

> therapy, etc. Maybe that is why he is doing so well.

>

> These past 9 months still feel like a nightmare that I am waiting to wake

> up from. Unfortunately, I've been awake the whole darn time!!!

>

> I have stopped nursing, it has been almost a month now. Do you think that

> might make him start presenting with some symptoms? He is on whole milk,

> and has had no problems.

>

> Sorry for my emotions, just can't seem to get my head around all this.

>

> Any advice, comments etc. are appreciated.

>

> Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2 yrs. wocf, Matty 9 mo. wcf

[Guest guest]

Cheryl,

I am not the mom of a CF child, but I am the one with CF. But I have asked my

parents over the years how they dealt with it all. I know that I was never

aware that they were upset or concerned about my sister and I, who both have

CF. I am 39 now and my sister is 48. I know my sister and I showed no

signs of CF for many years, but they did the enzymes and the treatments and

maybe that was the key to keeping it from making havoc with our lungs. I

know when I was a teenager, and I would cough more, but still felt very

healthy, I protested when the doctor would say I had to do the chest

physiotherapy. But we did it and I think it did help me from getting colds

to go into my lungs. My parents say that they believed the docs, but back

when I was diagnosed, things were still new on CF and no support like there

is now through the wonders of email. They relyed on reading articles, and

books and talking to our doctor. My dad did research into the cure of CF. He

was positive he would find the cure through is research he did every night in

our basement. My sister and I had no idea he did research into it. He had

many great ideas. Who knows, maybe he did find a cure, but it sits among his

papers now. My sister and I were diagnosed in 1969. I was 4 and my sister was

14.

Your son will surprise you with his fight and determination. I tell many

parents that yes their child get the CF gene, but I think we get another

" fighting, determined " gene that no one else gets and we get far on that. So

hang in there, your son will be the best thing to happen to you and your

family. Hope he is doing great today.

Joanne Schum

luckylungsforjo@...

>

>

> Hi All,

>

> I just have to let out my feelings again regarding my son's diagnosis. Can

> any of you out there give me your story? Did you think in the beginning it

> was a mistake? Maybe like me, your child didn't present with any

> problems/symptoms? My mother keeps telling me that I should be happy and

> grateful. I know that but its just so hard to accept when he is doing so

> well. Can they ever make a mistake? Is that so wrong of me to hope for

> that? I still continue with everything I have to do, meds, enzymes,

> therapy, etc. Maybe that is why he is doing so well.

>

> These past 9 months still feel like a nightmare that I am waiting to wake

> up from. Unfortunately, I've been awake the whole darn time!!!

>

> I have stopped nursing, it has been almost a month now. Do you think that

> might make him start presenting with some symptoms? He is on whole milk,

> and has had no problems.

>

> Sorry for my emotions, just can't seem to get my head around all this.

>

> Any advice, comments etc. are appreciated.

>

> Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2 yrs. wocf, Matty 9 mo. wcf

[Guest guest]

Cheryl,

CF for me was always in the back of my mind to some degree, but I really

lived the typical kids life. I went to school, I don't think my parents were

concerned. It could be they were not too concerned because I am the youngest

of 7 and figure it was like a school at home anyway with such a mixture of

kids running around.

I had my first IV when I was 14. But after that, every few years I would

need an IV. In my mid twenties is when my CF lungs started to be noticed by

myself and I eventually needed a lung transplant. Yes, I had a lung

transplant Sept 12, 1997. That is over 5 years ago!! Life has been

spectacular since then. My sister did not have her first IV until she was

40, and that was after she had 4 healthy kids!! She had a lung transplant

just over a year ago.

So while CF has been a part of my life, I didn't let it decide what I was

going to do. My sister traveled the country and Europe before she was

married. I went to college, got a great career (which I still work at now)

and I enjoy traveling extensively now.

I think my parents were concerned but they did not let it show and they did

not treat my sister and I very different. That was their coping mechanism I

suspect.

Yes, live each day, let your kids live each day. You don't want anyone in a

bubble. I suggest instilling good hygiene practices by everyone in your

family, all get flu shots and have any visitors to your house practice good

hygiene. Also, if someone is obviously sick, let them know that for your

son's sake, that you would love to have their company when they are not under

the weather. It is common sense stuff really that works great.

As to how my life has effected me. I still say to this day that while CF

has certainly given me many experiences I wish I had not been part of, I am

also thankful for it. I have met the greatest people because I have CF and

becuase I had a lung transplant. If I did not have CF, I think my life would

not be so fulfilling or meaningful. And I mean this truly!!! I really do.

Every day is a gift and every breath I take is a miracle and I appreciate

every breath my lungs give me. My donor family I hope knows that I am living

the best life and I could not be more thankful for it.

Enjoy the rest of the day.

Joanne

> Joanne,

> Thanks so much for all you wrote. It means a lot to me especially from

> someone like yourself who has the disease. What a promising thing too that

> you and your sister are still here with us and healthy. What has it been

> like for you? Were your parents worried about putting you in school

> because of all the bugs and viruses lurking? I am goingback to work this

> Jan. but luckily my hubby is going tostay homewithmy boys. It worries me

> so much, thinking about the future. But you areright, I need to just stay

> here in thepresent and enjoy each andevery day that he is healthy.

>

> Again, thanks somuch.

> Love and stuff

> Chery

>

[Guest guest]

Wow Cheryl, I know what you mean. When my first 2 were diagnosed, I was

relieved to find out it wasn't all in my head that something was actually

wrong. Phynix was born Arpil 24th weighing 8 pounds 8 ounces and pooped 12

hours on the dot after he was born. He was eating and growing I was

thinking FINALLY fate descided we needed a break. Well at 4 months we did

the sweat chloride test (the kids have an unidentified gene so genetics only

told us he was a carrier.) We found out later that day results came in at

101 and we found out a week later he has pseudomonus. I am currently preg

with an unexpected #4. I have already started telling myself that this one

has it. When we found out with PJ it HIT like a ton of bricks. Feels like

my whole world just came crashing down. A few weeks later I'm still trying

to pick up the pieces and go on. You cry when you get up, when you go to

bed and soon you won't cry so much anymore. It's like your heart get's hard

or numb to this.

Might I ask why your son was diagnosed? If he didn't have any symptoms what

was the cause for testing? It takes time and some good crazy meds, people

with a warm heart to talk to and an outlet for your feelings. It won't make

any of this go away, but it will make it a bit easier to deal with.

Jen A. mom to 4, Yolo 2 1/2, and Phynix 6 months all w/cf.

>

>Reply-To: cfparents

>To: cfparents >

>Subject: I'm shaking my head as to what subject to call this!

>Date: Thu, 7 Nov 2002 14:07:33 -0800

>

>Hi All,

>

>I just have to let out my feelings again regarding my son's diagnosis. Can

>any of you out there give me your story? Did you think in the beginning it

>was a mistake? Maybe like me, your child didn't present with any

>problems/symptoms? My mother keeps telling me that I should be happy and

>grateful. I know that but its just so hard to accept when he is doing so

>well. Can they ever make a mistake? Is that so wrong of me to hope for

>that? I still continue with everything I have to do, meds, enzymes,

>therapy, etc. Maybe that is why he is doing so well.

>

>These past 9 months still feel like a nightmare that I am waiting to wake

>up from. Unfortunately, I've been awake the whole darn time!!!

>

>I have stopped nursing, it has been almost a month now. Do you think that

>might make him start presenting with some symptoms? He is on whole milk,

>and has had no problems.

>

>Sorry for my emotions, just can't seem to get my head around all this.

>

>Any advice, comments etc. are appreciated.

>

>Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2 yrs. wocf, Matty 9 mo. wcf

>

>

>

[Guest guest]

Wow Cheryl, I know what you mean. When my first 2 were diagnosed, I was

relieved to find out it wasn't all in my head that something was actually

wrong. Phynix was born Arpil 24th weighing 8 pounds 8 ounces and pooped 12

hours on the dot after he was born. He was eating and growing I was

thinking FINALLY fate descided we needed a break. Well at 4 months we did

the sweat chloride test (the kids have an unidentified gene so genetics only

told us he was a carrier.) We found out later that day results came in at

101 and we found out a week later he has pseudomonus. I am currently preg

with an unexpected #4. I have already started telling myself that this one

has it. When we found out with PJ it HIT like a ton of bricks. Feels like

my whole world just came crashing down. A few weeks later I'm still trying

to pick up the pieces and go on. You cry when you get up, when you go to

bed and soon you won't cry so much anymore. It's like your heart get's hard

or numb to this.

Might I ask why your son was diagnosed? If he didn't have any symptoms what

was the cause for testing? It takes time and some good crazy meds, people

with a warm heart to talk to and an outlet for your feelings. It won't make

any of this go away, but it will make it a bit easier to deal with.

Jen A. mom to 4, Yolo 2 1/2, and Phynix 6 months all w/cf.

>

>Reply-To: cfparents

>To: cfparents >

>Subject: I'm shaking my head as to what subject to call this!

>Date: Thu, 7 Nov 2002 14:07:33 -0800

>

>Hi All,

>

>I just have to let out my feelings again regarding my son's diagnosis. Can

>any of you out there give me your story? Did you think in the beginning it

>was a mistake? Maybe like me, your child didn't present with any

>problems/symptoms? My mother keeps telling me that I should be happy and

>grateful. I know that but its just so hard to accept when he is doing so

>well. Can they ever make a mistake? Is that so wrong of me to hope for

>that? I still continue with everything I have to do, meds, enzymes,

>therapy, etc. Maybe that is why he is doing so well.

>

>These past 9 months still feel like a nightmare that I am waiting to wake

>up from. Unfortunately, I've been awake the whole darn time!!!

>

>I have stopped nursing, it has been almost a month now. Do you think that

>might make him start presenting with some symptoms? He is on whole milk,

>and has had no problems.

>

>Sorry for my emotions, just can't seem to get my head around all this.

>

>Any advice, comments etc. are appreciated.

>

>Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2 yrs. wocf, Matty 9 mo. wcf

>

>

>

[Guest guest]

Wow Cheryl, I know what you mean. When my first 2 were diagnosed, I was

relieved to find out it wasn't all in my head that something was actually

wrong. Phynix was born Arpil 24th weighing 8 pounds 8 ounces and pooped 12

hours on the dot after he was born. He was eating and growing I was

thinking FINALLY fate descided we needed a break. Well at 4 months we did

the sweat chloride test (the kids have an unidentified gene so genetics only

told us he was a carrier.) We found out later that day results came in at

101 and we found out a week later he has pseudomonus. I am currently preg

with an unexpected #4. I have already started telling myself that this one

has it. When we found out with PJ it HIT like a ton of bricks. Feels like

my whole world just came crashing down. A few weeks later I'm still trying

to pick up the pieces and go on. You cry when you get up, when you go to

bed and soon you won't cry so much anymore. It's like your heart get's hard

or numb to this.

Might I ask why your son was diagnosed? If he didn't have any symptoms what

was the cause for testing? It takes time and some good crazy meds, people

with a warm heart to talk to and an outlet for your feelings. It won't make

any of this go away, but it will make it a bit easier to deal with.

Jen A. mom to 4, Yolo 2 1/2, and Phynix 6 months all w/cf.

>

>Reply-To: cfparents

>To: cfparents >

>Subject: I'm shaking my head as to what subject to call this!

>Date: Thu, 7 Nov 2002 14:07:33 -0800

>

>Hi All,

>

>I just have to let out my feelings again regarding my son's diagnosis. Can

>any of you out there give me your story? Did you think in the beginning it

>was a mistake? Maybe like me, your child didn't present with any

>problems/symptoms? My mother keeps telling me that I should be happy and

>grateful. I know that but its just so hard to accept when he is doing so

>well. Can they ever make a mistake? Is that so wrong of me to hope for

>that? I still continue with everything I have to do, meds, enzymes,

>therapy, etc. Maybe that is why he is doing so well.

>

>These past 9 months still feel like a nightmare that I am waiting to wake

>up from. Unfortunately, I've been awake the whole darn time!!!

>

>I have stopped nursing, it has been almost a month now. Do you think that

>might make him start presenting with some symptoms? He is on whole milk,

>and has had no problems.

>

>Sorry for my emotions, just can't seem to get my head around all this.

>

>Any advice, comments etc. are appreciated.

>

>Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2 yrs. wocf, Matty 9 mo. wcf

>

>

>

[Guest guest]

Cheryl,

My son has no cf symptoms. He is pancreatic sufficient and has no lung

involvement (yet). He is 2.5 now, was diagnosed at 4 months after

dehydration and salt loss. The first year I sometimes would think briefly,

" well, maybe the sweat test was a false positive " but then the next second I

would remember that the dna test showed 2 mutations, so, yes, he has cf.

But we just do his therapy and med. like the cf clinic tells us and pretty

much go on faith that it is helping keep the cf at bay. It really has just

become a routine now and we don't dwell on it. We just treat it like this

is life, this is what we do. This may be easier for us that some other

parents on the list, because JC is so healthy and really needs very little

more care that " normal " kids.

As for the breastfeeding. I nursed for 18 months. (Ofcourse he was getting

solids by then too) JC never missed a beat. Nothing changed as far as

his health or digestion. I do believe that the bf is one of the reasons he

has stayed so healthy.

Hope this helps.

Angie P.

---- Original Message -----

To: cfparents >

Sent: Thursday, November 07, 2002 5:07 PM

Subject: I'm shaking my head as to what subject to call this!

> Hi All,

>

> I just have to let out my feelings again regarding my son's diagnosis. Can

any of you out there give me your story? Did you think in the beginning it

was a mistake? Maybe like me, your child didn't present with any

problems/symptoms? My mother keeps telling me that I should be happy and

grateful. I know that but its just so hard to accept when he is doing so

well. Can they ever make a mistake? Is that so wrong of me to hope for

that? I still continue with everything I have to do, meds, enzymes,

therapy, etc. Maybe that is why he is doing so well.

>

> These past 9 months still feel like a nightmare that I am waiting to wake

up from. Unfortunately, I've been awake the whole darn time!!!

>

> I have stopped nursing, it has been almost a month now. Do you think that

might make him start presenting with some symptoms? He is on whole milk,

and has had no problems.

>

> Sorry for my emotions, just can't seem to get my head around all this.

>

> Any advice, comments etc. are appreciated.

>

> Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2 yrs. wocf, Matty 9 mo. wcf

>

>

[Guest guest]

Joanne,

Thanks so much for all you wrote. It means a lot to me especially from someone

like yourself who has the disease. What a promising thing too that you and your

sister are still here with us and healthy. What has it been like for you? Were

your parents worried about putting you in school because of all the bugs and

viruses lurking? I am goingback to work this Jan. but luckily my hubby is going

tostay homewithmy boys. It worries me so much, thinking about the future. But

you areright, I need to just stay here in thepresent and enjoy each andevery day

that he is healthy.

Again, thanks somuch.

Love and stuff

Chery

Re: I'm shaking my head as to what subject to call this!

Cheryl,

I am not the mom of a CF child, but I am the one with CF. But I have asked my

parents over the years how they dealt with it all. I know that I was never

aware that they were upset or concerned about my sister and I, who both have

CF. I am 39 now and my sister is 48. I know my sister and I showed no

signs of CF for many years, but they did the enzymes and the treatments and

maybe that was the key to keeping it from making havoc with our lungs. I

know when I was a teenager, and I would cough more, but still felt very

healthy, I protested when the doctor would say I had to do the chest

physiotherapy. But we did it and I think it did help me from getting colds

to go into my lungs. My parents say that they believed the docs, but back

when I was diagnosed, things were still new on CF and no support like there

is now through the wonders of email. They relyed on reading articles, and

books and talking to our doctor. My dad did research into the cure of CF. He

was positive he would find the cure through is research he did every night in

our basement. My sister and I had no idea he did research into it. He had

many great ideas. Who knows, maybe he did find a cure, but it sits among his

papers now. My sister and I were diagnosed in 1969. I was 4 and my sister was

14.

Your son will surprise you with his fight and determination. I tell many

parents that yes their child get the CF gene, but I think we get another

" fighting, determined " gene that no one else gets and we get far on that. So

hang in there, your son will be the best thing to happen to you and your

family. Hope he is doing great today.

Joanne Schum

luckylungsforjo@...

>

>

> Hi All,

>

> I just have to let out my feelings again regarding my son's diagnosis. Can

> any of you out there give me your story? Did you think in the beginning it

> was a mistake? Maybe like me, your child didn't present with any

> problems/symptoms? My mother keeps telling me that I should be happy and

> grateful. I know that but its just so hard to accept when he is doing so

> well. Can they ever make a mistake? Is that so wrong of me to hope for

> that? I still continue with everything I have to do, meds, enzymes,

> therapy, etc. Maybe that is why he is doing so well.

>

> These past 9 months still feel like a nightmare that I am waiting to wake

> up from. Unfortunately, I've been awake the whole darn time!!!

>

> I have stopped nursing, it has been almost a month now. Do you think that

> might make him start presenting with some symptoms? He is on whole milk,

> and has had no problems.

>

> Sorry for my emotions, just can't seem to get my head around all this.

>

> Any advice, comments etc. are appreciated.

>

> Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2 yrs. wocf, Matty 9 mo. wcf

[Guest guest]

Joanne,

I wish I could see you face to face to say " thankyou " . But the best I can do is

in this email. Words cannot explain how I feel when I read your words. You give

me so much hope, so much hope for my young son . I need to be strong for

him. You don't think you have it in you to be as strong as you need to be but

some how we find it. You have given me so much inspiration. Tks.

cheryl

Re: I'm shaking my head as to what subject to call this!

Cheryl,

CF for me was always in the back of my mind to some degree, but I really

lived the typical kids life. I went to school, I don't think my parents were

concerned. It could be they were not too concerned because I am the youngest

of 7 and figure it was like a school at home anyway with such a mixture of

kids running around.

I had my first IV when I was 14. But after that, every few years I would

need an IV. In my mid twenties is when my CF lungs started to be noticed by

myself and I eventually needed a lung transplant. Yes, I had a lung

transplant Sept 12, 1997. That is over 5 years ago!! Life has been

spectacular since then. My sister did not have her first IV until she was

40, and that was after she had 4 healthy kids!! She had a lung transplant

just over a year ago.

So while CF has been a part of my life, I didn't let it decide what I was

going to do. My sister traveled the country and Europe before she was

married. I went to college, got a great career (which I still work at now)

and I enjoy traveling extensively now.

I think my parents were concerned but they did not let it show and they did

not treat my sister and I very different. That was their coping mechanism I

suspect.

Yes, live each day, let your kids live each day. You don't want anyone in a

bubble. I suggest instilling good hygiene practices by everyone in your

family, all get flu shots and have any visitors to your house practice good

hygiene. Also, if someone is obviously sick, let them know that for your

son's sake, that you would love to have their company when they are not under

the weather. It is common sense stuff really that works great.

As to how my life has effected me. I still say to this day that while CF

has certainly given me many experiences I wish I had not been part of, I am

also thankful for it. I have met the greatest people because I have CF and

becuase I had a lung transplant. If I did not have CF, I think my life would

not be so fulfilling or meaningful. And I mean this truly!!! I really do.

Every day is a gift and every breath I take is a miracle and I appreciate

every breath my lungs give me. My donor family I hope knows that I am living

the best life and I could not be more thankful for it.

Enjoy the rest of the day.

Joanne

> Joanne,

> Thanks so much for all you wrote. It means a lot to me especially from

> someone like yourself who has the disease. What a promising thing too that

> you and your sister are still here with us and healthy. What has it been

> like for you? Were your parents worried about putting you in school

> because of all the bugs and viruses lurking? I am goingback to work this

> Jan. but luckily my hubby is going tostay homewithmy boys. It worries me

> so much, thinking about the future. But you areright, I need to just stay

> here in thepresent and enjoy each andevery day that he is healthy.

>

> Again, thanks somuch.

> Love and stuff

> Chery

>

[Guest guest]

Joanne,

I wish I could see you face to face to say " thankyou " . But the best I can do is

in this email. Words cannot explain how I feel when I read your words. You give

me so much hope, so much hope for my young son . I need to be strong for

him. You don't think you have it in you to be as strong as you need to be but

some how we find it. You have given me so much inspiration. Tks.

cheryl

Re: I'm shaking my head as to what subject to call this!

Cheryl,

CF for me was always in the back of my mind to some degree, but I really

lived the typical kids life. I went to school, I don't think my parents were

concerned. It could be they were not too concerned because I am the youngest

of 7 and figure it was like a school at home anyway with such a mixture of

kids running around.

I had my first IV when I was 14. But after that, every few years I would

need an IV. In my mid twenties is when my CF lungs started to be noticed by

myself and I eventually needed a lung transplant. Yes, I had a lung

transplant Sept 12, 1997. That is over 5 years ago!! Life has been

spectacular since then. My sister did not have her first IV until she was

40, and that was after she had 4 healthy kids!! She had a lung transplant

just over a year ago.

So while CF has been a part of my life, I didn't let it decide what I was

going to do. My sister traveled the country and Europe before she was

married. I went to college, got a great career (which I still work at now)

and I enjoy traveling extensively now.

I think my parents were concerned but they did not let it show and they did

not treat my sister and I very different. That was their coping mechanism I

suspect.

Yes, live each day, let your kids live each day. You don't want anyone in a

bubble. I suggest instilling good hygiene practices by everyone in your

family, all get flu shots and have any visitors to your house practice good

hygiene. Also, if someone is obviously sick, let them know that for your

son's sake, that you would love to have their company when they are not under

the weather. It is common sense stuff really that works great.

As to how my life has effected me. I still say to this day that while CF

has certainly given me many experiences I wish I had not been part of, I am

also thankful for it. I have met the greatest people because I have CF and

becuase I had a lung transplant. If I did not have CF, I think my life would

not be so fulfilling or meaningful. And I mean this truly!!! I really do.

Every day is a gift and every breath I take is a miracle and I appreciate

every breath my lungs give me. My donor family I hope knows that I am living

the best life and I could not be more thankful for it.

Enjoy the rest of the day.

Joanne

> Joanne,

> Thanks so much for all you wrote. It means a lot to me especially from

> someone like yourself who has the disease. What a promising thing too that

> you and your sister are still here with us and healthy. What has it been

> like for you? Were your parents worried about putting you in school

> because of all the bugs and viruses lurking? I am goingback to work this

> Jan. but luckily my hubby is going tostay homewithmy boys. It worries me

> so much, thinking about the future. But you areright, I need to just stay

> here in thepresent and enjoy each andevery day that he is healthy.

>

> Again, thanks somuch.

> Love and stuff

> Chery

>

[Guest guest]

Joanne,

I wish I could see you face to face to say " thankyou " . But the best I can do is

in this email. Words cannot explain how I feel when I read your words. You give

me so much hope, so much hope for my young son . I need to be strong for

him. You don't think you have it in you to be as strong as you need to be but

some how we find it. You have given me so much inspiration. Tks.

cheryl

Re: I'm shaking my head as to what subject to call this!

Cheryl,

CF for me was always in the back of my mind to some degree, but I really

lived the typical kids life. I went to school, I don't think my parents were

concerned. It could be they were not too concerned because I am the youngest

of 7 and figure it was like a school at home anyway with such a mixture of

kids running around.

I had my first IV when I was 14. But after that, every few years I would

need an IV. In my mid twenties is when my CF lungs started to be noticed by

myself and I eventually needed a lung transplant. Yes, I had a lung

transplant Sept 12, 1997. That is over 5 years ago!! Life has been

spectacular since then. My sister did not have her first IV until she was

40, and that was after she had 4 healthy kids!! She had a lung transplant

just over a year ago.

So while CF has been a part of my life, I didn't let it decide what I was

going to do. My sister traveled the country and Europe before she was

married. I went to college, got a great career (which I still work at now)

and I enjoy traveling extensively now.

I think my parents were concerned but they did not let it show and they did

not treat my sister and I very different. That was their coping mechanism I

suspect.

Yes, live each day, let your kids live each day. You don't want anyone in a

bubble. I suggest instilling good hygiene practices by everyone in your

family, all get flu shots and have any visitors to your house practice good

hygiene. Also, if someone is obviously sick, let them know that for your

son's sake, that you would love to have their company when they are not under

the weather. It is common sense stuff really that works great.

As to how my life has effected me. I still say to this day that while CF

has certainly given me many experiences I wish I had not been part of, I am

also thankful for it. I have met the greatest people because I have CF and

becuase I had a lung transplant. If I did not have CF, I think my life would

not be so fulfilling or meaningful. And I mean this truly!!! I really do.

Every day is a gift and every breath I take is a miracle and I appreciate

every breath my lungs give me. My donor family I hope knows that I am living

the best life and I could not be more thankful for it.

Enjoy the rest of the day.

Joanne

> Joanne,

> Thanks so much for all you wrote. It means a lot to me especially from

> someone like yourself who has the disease. What a promising thing too that

> you and your sister are still here with us and healthy. What has it been

> like for you? Were your parents worried about putting you in school

> because of all the bugs and viruses lurking? I am goingback to work this

> Jan. but luckily my hubby is going tostay homewithmy boys. It worries me

> so much, thinking about the future. But you areright, I need to just stay

> here in thepresent and enjoy each andevery day that he is healthy.

>

> Again, thanks somuch.

> Love and stuff

> Chery

>

[Guest guest]

-Cheryl

I think that is very normal, and, I also think it is a coping

mechanism. So long as you do everything you are supposed to do,

perhaps there is nothing wrong with living in a daze, so to speak. I

know that now that it has been several years since diagnosis, there

are still days we are in a daze...but there are more days that we do

treatments by rote, enjoy life and actually never even think about

CF. Sometimes, these days happen even when the kids are on ivs. I

know that may seem weird, but after awhile everything is so routine

that every little treatment doesn't hit you in the stomach.

I don't know if that makes sense or not.

we are all here for support.

take care,

Jen

mommy of 7, 3 with CF (mallory still on ivs)

-- In cfparents@y..., luckylungsforjo@a... wrote:

> Cheryl,

>

> I am not the mom of a CF child, but I am the one with CF. But I

have asked my

> parents over the years how they dealt with it all. I know that I

was never

> aware that they were upset or concerned about my sister and I, who

both have

> CF. I am 39 now and my sister is 48. I know my sister and I

showed no

> signs of CF for many years, but they did the enzymes and the

treatments and

> maybe that was the key to keeping it from making havoc with our

lungs. I

> know when I was a teenager, and I would cough more, but still felt

very

> healthy, I protested when the doctor would say I had to do the

chest

> physiotherapy. But we did it and I think it did help me from

getting colds

> to go into my lungs. My parents say that they believed the docs,

but back

> when I was diagnosed, things were still new on CF and no support

like there

> is now through the wonders of email. They relyed on reading

articles, and

> books and talking to our doctor. My dad did research into the cure

of CF. He

> was positive he would find the cure through is research he did

every night in

> our basement. My sister and I had no idea he did research into

it. He had

> many great ideas. Who knows, maybe he did find a cure, but it sits

among his

> papers now. My sister and I were diagnosed in 1969. I was 4 and my

sister was

> 14.

>

> Your son will surprise you with his fight and determination. I tell

many

> parents that yes their child get the CF gene, but I think we get

another

> " fighting, determined " gene that no one else gets and we get far on

that. So

> hang in there, your son will be the best thing to happen to you and

your

> family. Hope he is doing great today.

> Joanne Schum

> luckylungsforjo@a...

> >

> >

> > Hi All,

> >

> > I just have to let out my feelings again regarding my son's

diagnosis. Can

> > any of you out there give me your story? Did you think in the

beginning it

> > was a mistake? Maybe like me, your child didn't present with any

> > problems/symptoms? My mother keeps telling me that I should be

happy and

> > grateful. I know that but its just so hard to accept when he is

doing so

> > well. Can they ever make a mistake? Is that so wrong of me to

hope for

> > that? I still continue with everything I have to do, meds,

enzymes,

> > therapy, etc. Maybe that is why he is doing so well.

> >

> > These past 9 months still feel like a nightmare that I am waiting

to wake

> > up from. Unfortunately, I've been awake the whole darn time!!!

> >

> > I have stopped nursing, it has been almost a month now. Do you

think that

> > might make him start presenting with some symptoms? He is on

whole milk,

> > and has had no problems.

> >

> > Sorry for my emotions, just can't seem to get my head around all

this.

> >

> > Any advice, comments etc. are appreciated.

> >

> > Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2 yrs. wocf, Matty 9

mo. wcf

>

>

>

>

>

[Guest guest]

-Cheryl

I think that is very normal, and, I also think it is a coping

mechanism. So long as you do everything you are supposed to do,

perhaps there is nothing wrong with living in a daze, so to speak. I

know that now that it has been several years since diagnosis, there

are still days we are in a daze...but there are more days that we do

treatments by rote, enjoy life and actually never even think about

CF. Sometimes, these days happen even when the kids are on ivs. I

know that may seem weird, but after awhile everything is so routine

that every little treatment doesn't hit you in the stomach.

I don't know if that makes sense or not.

we are all here for support.

take care,

Jen

mommy of 7, 3 with CF (mallory still on ivs)

-- In cfparents@y..., luckylungsforjo@a... wrote:

> Cheryl,

>

> I am not the mom of a CF child, but I am the one with CF. But I

have asked my

> parents over the years how they dealt with it all. I know that I

was never

> aware that they were upset or concerned about my sister and I, who

both have

> CF. I am 39 now and my sister is 48. I know my sister and I

showed no

> signs of CF for many years, but they did the enzymes and the

treatments and

> maybe that was the key to keeping it from making havoc with our

lungs. I

> know when I was a teenager, and I would cough more, but still felt

very

> healthy, I protested when the doctor would say I had to do the

chest

> physiotherapy. But we did it and I think it did help me from

getting colds

> to go into my lungs. My parents say that they believed the docs,

but back

> when I was diagnosed, things were still new on CF and no support

like there

> is now through the wonders of email. They relyed on reading

articles, and

> books and talking to our doctor. My dad did research into the cure

of CF. He

> was positive he would find the cure through is research he did

every night in

> our basement. My sister and I had no idea he did research into

it. He had

> many great ideas. Who knows, maybe he did find a cure, but it sits

among his

> papers now. My sister and I were diagnosed in 1969. I was 4 and my

sister was

> 14.

>

> Your son will surprise you with his fight and determination. I tell

many

> parents that yes their child get the CF gene, but I think we get

another

> " fighting, determined " gene that no one else gets and we get far on

that. So

> hang in there, your son will be the best thing to happen to you and

your

> family. Hope he is doing great today.

> Joanne Schum

> luckylungsforjo@a...

> >

> >

> > Hi All,

> >

> > I just have to let out my feelings again regarding my son's

diagnosis. Can

> > any of you out there give me your story? Did you think in the

beginning it

> > was a mistake? Maybe like me, your child didn't present with any

> > problems/symptoms? My mother keeps telling me that I should be

happy and

> > grateful. I know that but its just so hard to accept when he is

doing so

> > well. Can they ever make a mistake? Is that so wrong of me to

hope for

> > that? I still continue with everything I have to do, meds,

enzymes,

> > therapy, etc. Maybe that is why he is doing so well.

> >

> > These past 9 months still feel like a nightmare that I am waiting

to wake

> > up from. Unfortunately, I've been awake the whole darn time!!!

> >

> > I have stopped nursing, it has been almost a month now. Do you

think that

> > might make him start presenting with some symptoms? He is on

whole milk,

> > and has had no problems.

> >

> > Sorry for my emotions, just can't seem to get my head around all

this.

> >

> > Any advice, comments etc. are appreciated.

> >

> > Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2 yrs. wocf, Matty 9

mo. wcf

>

>

>

>

>

[Guest guest]

-Cheryl

I think that is very normal, and, I also think it is a coping

mechanism. So long as you do everything you are supposed to do,

perhaps there is nothing wrong with living in a daze, so to speak. I

know that now that it has been several years since diagnosis, there

are still days we are in a daze...but there are more days that we do

treatments by rote, enjoy life and actually never even think about

CF. Sometimes, these days happen even when the kids are on ivs. I

know that may seem weird, but after awhile everything is so routine

that every little treatment doesn't hit you in the stomach.

I don't know if that makes sense or not.

we are all here for support.

take care,

Jen

mommy of 7, 3 with CF (mallory still on ivs)

-- In cfparents@y..., luckylungsforjo@a... wrote:

> Cheryl,

>

> I am not the mom of a CF child, but I am the one with CF. But I

have asked my

> parents over the years how they dealt with it all. I know that I

was never

> aware that they were upset or concerned about my sister and I, who

both have

> CF. I am 39 now and my sister is 48. I know my sister and I

showed no

> signs of CF for many years, but they did the enzymes and the

treatments and

> maybe that was the key to keeping it from making havoc with our

lungs. I

> know when I was a teenager, and I would cough more, but still felt

very

> healthy, I protested when the doctor would say I had to do the

chest

> physiotherapy. But we did it and I think it did help me from

getting colds

> to go into my lungs. My parents say that they believed the docs,

but back

> when I was diagnosed, things were still new on CF and no support

like there

> is now through the wonders of email. They relyed on reading

articles, and

> books and talking to our doctor. My dad did research into the cure

of CF. He

> was positive he would find the cure through is research he did

every night in

> our basement. My sister and I had no idea he did research into

it. He had

> many great ideas. Who knows, maybe he did find a cure, but it sits

among his

> papers now. My sister and I were diagnosed in 1969. I was 4 and my

sister was

> 14.

>

> Your son will surprise you with his fight and determination. I tell

many

> parents that yes their child get the CF gene, but I think we get

another

> " fighting, determined " gene that no one else gets and we get far on

that. So

> hang in there, your son will be the best thing to happen to you and

your

> family. Hope he is doing great today.

> Joanne Schum

> luckylungsforjo@a...

> >

> >

> > Hi All,

> >

> > I just have to let out my feelings again regarding my son's

diagnosis. Can

> > any of you out there give me your story? Did you think in the

beginning it

> > was a mistake? Maybe like me, your child didn't present with any

> > problems/symptoms? My mother keeps telling me that I should be

happy and

> > grateful. I know that but its just so hard to accept when he is

doing so

> > well. Can they ever make a mistake? Is that so wrong of me to

hope for

> > that? I still continue with everything I have to do, meds,

enzymes,

> > therapy, etc. Maybe that is why he is doing so well.

> >

> > These past 9 months still feel like a nightmare that I am waiting

to wake

> > up from. Unfortunately, I've been awake the whole darn time!!!

> >

> > I have stopped nursing, it has been almost a month now. Do you

think that

> > might make him start presenting with some symptoms? He is on

whole milk,

> > and has had no problems.

> >

> > Sorry for my emotions, just can't seem to get my head around all

this.

> >

> > Any advice, comments etc. are appreciated.

> >

> > Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2 yrs. wocf, Matty 9

mo. wcf

>

>

>

>

>

[Guest guest]

In a message dated 11/7/02 2:12:49 PM Eastern Standard Time,

tczcowl@... writes:

> I just have to let out my feelings again regarding my son's diagnosis. Can

> any of you out there give me your story? Did you think in the beginning it

> was a mistake? Maybe like me, your child didn't present with any

> problems/symptoms

Hi Cheryl, my dtr wasn't dx until 15 mos. Her

illnesses,hospitalizations, etc were always blamed on her downs. Then when

she tested positive with the sweat test I couldn't believe it. My son had

more symptoms than her (he is a carrier only). And now she was found to be

pancreatic sufficient after years of taking enzymes. I still sometimes (in

the back of my head) wonder if maybe just maybe she doesn't have CF. Her

mutations are not identifiable either. Of course her pulmonologist would

disagree.

Sally

[Guest guest]

In a message dated 11/7/02 2:12:49 PM Eastern Standard Time,

tczcowl@... writes:

> I just have to let out my feelings again regarding my son's diagnosis. Can

> any of you out there give me your story? Did you think in the beginning it

> was a mistake? Maybe like me, your child didn't present with any

> problems/symptoms

Hi Cheryl, my dtr wasn't dx until 15 mos. Her

illnesses,hospitalizations, etc were always blamed on her downs. Then when

she tested positive with the sweat test I couldn't believe it. My son had

more symptoms than her (he is a carrier only). And now she was found to be

pancreatic sufficient after years of taking enzymes. I still sometimes (in

the back of my head) wonder if maybe just maybe she doesn't have CF. Her

mutations are not identifiable either. Of course her pulmonologist would

disagree.

Sally

[Guest guest]

In a message dated 11/7/02 2:12:49 PM Eastern Standard Time,

tczcowl@... writes:

> I just have to let out my feelings again regarding my son's diagnosis. Can

> any of you out there give me your story? Did you think in the beginning it

> was a mistake? Maybe like me, your child didn't present with any

> problems/symptoms

Hi Cheryl, my dtr wasn't dx until 15 mos. Her

illnesses,hospitalizations, etc were always blamed on her downs. Then when

she tested positive with the sweat test I couldn't believe it. My son had

more symptoms than her (he is a carrier only). And now she was found to be

pancreatic sufficient after years of taking enzymes. I still sometimes (in

the back of my head) wonder if maybe just maybe she doesn't have CF. Her

mutations are not identifiable either. Of course her pulmonologist would

disagree.

Sally

[Guest guest]

Cheryl,

CF is a terrible diagnosis, and I wouldn't wish

it on anyone. However, once you've gotten the

news there is only one thing to do, and you're

doing it! Take the best possible care of your child

you can. Period. Obsessing over it isn't going to

change the diagnosis, and having a child whose health

doesn't seem affected by it doesn't mean you can

sit happily in denial and forget the treatments and

enzymes (unless your child is pancreatic sufficient),

and proper hygiene practises.

CF is often a silent disease. Many kids don't even

have coughs unless they're experiencing an infection.

But even in seemingly healthy CF kids, CF is doing

its damage silently and stealthily, albeit in some

cases slower than in others.

My twins were born 14 weeks premature. Their poor

little lungs were already compromised by being

not quite fully formed. They were on ventilators which

did their own damage, so they weren't diagnosed

with cf until they couldn't get off the vents for

3 months. They needed O2 until they were over 2 years

adjusted age. They are doing very well now,

considering where they started, but if you compared

with other 3 yo cf kids, they probably have more

lung involvement, simply because they also had BPD

(bronchopulmonary displasia - caused by extended

use of ventilators). There are many reminders for me

that they are sick and need treatment like their

mic-key buttons which are the only way so far that

they can get nutrition, because they don't eat, and

their reflux which causes Alli to vomit almost every

time she eats. Yet, I STILL fall into the denial

trap every now and then - so having a seemingly

healthy child must make it VERY HARD to understand

such a serious diagnosis.

You ARE fortunate that your son is in such good

health now. Do everything humanly possible to keep

it that way. Stay informed, read everything you can,

pay close attention to your son's baseline health and

jump on it when it veers off-course. Then, try to

relax and give yourself and your son the best life

possible.

hugs,

C

Mommy to Mick and Alli, 2.75 yo twins wcf

[Guest guest]

Cheryl,

CF is a terrible diagnosis, and I wouldn't wish

it on anyone. However, once you've gotten the

news there is only one thing to do, and you're

doing it! Take the best possible care of your child

you can. Period. Obsessing over it isn't going to

change the diagnosis, and having a child whose health

doesn't seem affected by it doesn't mean you can

sit happily in denial and forget the treatments and

enzymes (unless your child is pancreatic sufficient),

and proper hygiene practises.

CF is often a silent disease. Many kids don't even

have coughs unless they're experiencing an infection.

But even in seemingly healthy CF kids, CF is doing

its damage silently and stealthily, albeit in some

cases slower than in others.

My twins were born 14 weeks premature. Their poor

little lungs were already compromised by being

not quite fully formed. They were on ventilators which

did their own damage, so they weren't diagnosed

with cf until they couldn't get off the vents for

3 months. They needed O2 until they were over 2 years

adjusted age. They are doing very well now,

considering where they started, but if you compared

with other 3 yo cf kids, they probably have more

lung involvement, simply because they also had BPD

(bronchopulmonary displasia - caused by extended

use of ventilators). There are many reminders for me

that they are sick and need treatment like their

mic-key buttons which are the only way so far that

they can get nutrition, because they don't eat, and

their reflux which causes Alli to vomit almost every

time she eats. Yet, I STILL fall into the denial

trap every now and then - so having a seemingly

healthy child must make it VERY HARD to understand

such a serious diagnosis.

You ARE fortunate that your son is in such good

health now. Do everything humanly possible to keep

it that way. Stay informed, read everything you can,

pay close attention to your son's baseline health and

jump on it when it veers off-course. Then, try to

relax and give yourself and your son the best life

possible.

hugs,

C

Mommy to Mick and Alli, 2.75 yo twins wcf

[Guest guest]

Cheryl,

CF is a terrible diagnosis, and I wouldn't wish

it on anyone. However, once you've gotten the

news there is only one thing to do, and you're

doing it! Take the best possible care of your child

you can. Period. Obsessing over it isn't going to

change the diagnosis, and having a child whose health

doesn't seem affected by it doesn't mean you can

sit happily in denial and forget the treatments and

enzymes (unless your child is pancreatic sufficient),

and proper hygiene practises.

CF is often a silent disease. Many kids don't even

have coughs unless they're experiencing an infection.

But even in seemingly healthy CF kids, CF is doing

its damage silently and stealthily, albeit in some

cases slower than in others.

My twins were born 14 weeks premature. Their poor

little lungs were already compromised by being

not quite fully formed. They were on ventilators which

did their own damage, so they weren't diagnosed

with cf until they couldn't get off the vents for

3 months. They needed O2 until they were over 2 years

adjusted age. They are doing very well now,

considering where they started, but if you compared

with other 3 yo cf kids, they probably have more

lung involvement, simply because they also had BPD

(bronchopulmonary displasia - caused by extended

use of ventilators). There are many reminders for me

that they are sick and need treatment like their

mic-key buttons which are the only way so far that

they can get nutrition, because they don't eat, and

their reflux which causes Alli to vomit almost every

time she eats. Yet, I STILL fall into the denial

trap every now and then - so having a seemingly

healthy child must make it VERY HARD to understand

such a serious diagnosis.

You ARE fortunate that your son is in such good

health now. Do everything humanly possible to keep

it that way. Stay informed, read everything you can,

pay close attention to your son's baseline health and

jump on it when it veers off-course. Then, try to

relax and give yourself and your son the best life

possible.

hugs,

C

Mommy to Mick and Alli, 2.75 yo twins wcf