Re: I can never believe that doctors say things

[Guest guest]

In a message dated 12/2/2002 4:29:35 PM Central Standard Time,

Mcesana@... writes:

> four with each family---good grief! Friends of ours in Oregon had nine

> kids with cf!

WOW!!! 9 kids with CF I guess I better count my blessings. I thought I had it

bad with two. I can't image what it would be like with 9 WOW!! WOW!!! I can't

believe it!!! I don't even what to think what there medical bills are like or

what there house is like with all of the nebulizers and med.'s. I hope they

have a solid marriage if they don't it would defiantly be a true test of

there love. To have to deal with all that. WOW!!! I couldn't imagine! Deb A

[Guest guest]

In a message dated 12/2/2002 4:29:35 PM Central Standard Time,

Mcesana@... writes:

> four with each family---good grief! Friends of ours in Oregon had nine

> kids with cf!

WOW!!! 9 kids with CF I guess I better count my blessings. I thought I had it

bad with two. I can't image what it would be like with 9 WOW!! WOW!!! I can't

believe it!!! I don't even what to think what there medical bills are like or

what there house is like with all of the nebulizers and med.'s. I hope they

have a solid marriage if they don't it would defiantly be a true test of

there love. To have to deal with all that. WOW!!! I couldn't imagine! Deb A

[Guest guest]

In a message dated 12/2/2002 4:29:35 PM Central Standard Time,

Mcesana@... writes:

> four with each family---good grief! Friends of ours in Oregon had nine

> kids with cf!

WOW!!! 9 kids with CF I guess I better count my blessings. I thought I had it

bad with two. I can't image what it would be like with 9 WOW!! WOW!!! I can't

believe it!!! I don't even what to think what there medical bills are like or

what there house is like with all of the nebulizers and med.'s. I hope they

have a solid marriage if they don't it would defiantly be a true test of

there love. To have to deal with all that. WOW!!! I couldn't imagine! Deb A

[Guest guest]

9 kids with CF..........the mother must be a saint...albeit crazy as all hell

by now...

Whats scary is my first thought is " Are they still married?

Rosemary in New York with 3 children with CF - they are 12, 10, 6...I coined

the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for

this - TOBI after their medication!

[Guest guest]

9 kids with CF..........the mother must be a saint...albeit crazy as all hell

by now...

Whats scary is my first thought is " Are they still married?

Rosemary in New York with 3 children with CF - they are 12, 10, 6...I coined

the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for

this - TOBI after their medication!

[Guest guest]

9 kids with CF..........the mother must be a saint...albeit crazy as all hell

by now...

Whats scary is my first thought is " Are they still married?

Rosemary in New York with 3 children with CF - they are 12, 10, 6...I coined

the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for

this - TOBI after their medication!

[Guest guest]

Sure. . .but I met them in Pendleton, Oregon when their youngest son

and I had the same doctor. Kid died in 1988. Parents were both from

Ireland, did not know diddly about medical care, why they had lost rela

tives from an older generation at so young an age due to lung disease,

just thought it must have been TB. The carrier rate in Ireland is very

high, and the rest you can imagine. I think that they were more than

halfway through the lot of the kids before anyone even suggested cf,

and then it was not taken seriously--so no one got decent medical care,

and only one lived most of his life after the possibility of some genetic

identification--and never had it--just could not bring themselves to go

clear into Portland to get that blood drawn--just too far--not bad parents,

just did not have a clue as to the significance that it might make.

They are still together, had always gotten on well, and are only a bit ol

der than I, but look years older. I still keep in touch with them--partly be

cause they do not have anyone else left in the usa.

Love,

n

[Guest guest]

n,

Are you serious? 9?!? All with CF?!? Wow! What are the odds of that!

How are they doing?

Keeley

I can never believe that doctors say things

like that the 7th child can't have cf: it is a Mendelian hereditary pattern;

therefore, the odds are one in FOUR with EACH pregnancy, not one in

four with each family---good grief! Friends of ours in Oregon had nine

kids with cf! My husband (a professor, not a doctor, although with Ph.D.,

always maintained that M.D. stood for " Mentally Defective! "

He did not really mean it; he loved his doctors; he just had fits at some

of mine and of one of the kids.

Cheers, all at cfparents,

n Rojas

[Guest guest]

Wow...did both parents have CF, or were they only carriers? Just the odds on

all 9 kids having CF is so low if they were carriers...but somewhat better if

they actually had CF themselves.

Shanna

mom of Triana, age 2 wcf

Re: I can never believe that doctors say things

Sure. . .but I met them in Pendleton, Oregon when their youngest son

and I had the same doctor. Kid died in 1988. Parents were both from

Ireland, did not know diddly about medical care, why they had lost rela

tives from an older generation at so young an age due to lung disease,

just thought it must have been TB. The carrier rate in Ireland is very

high, and the rest you can imagine. I think that they were more than

halfway through the lot of the kids before anyone even suggested cf,

and then it was not taken seriously--so no one got decent medical care,

and only one lived most of his life after the possibility of some genetic

identification--and never had it--just could not bring themselves to go

clear into Portland to get that blood drawn--just too far--not bad parents,

just did not have a clue as to the significance that it might make.

They are still together, had always gotten on well, and are only a bit ol

der than I, but look years older. I still keep in touch with them--partly be

cause they do not have anyone else left in the usa.

Love,

n

[Guest guest]

Wow...did both parents have CF, or were they only carriers? Just the odds on

all 9 kids having CF is so low if they were carriers...but somewhat better if

they actually had CF themselves.

Shanna

mom of Triana, age 2 wcf

Re: I can never believe that doctors say things

Sure. . .but I met them in Pendleton, Oregon when their youngest son

and I had the same doctor. Kid died in 1988. Parents were both from

Ireland, did not know diddly about medical care, why they had lost rela

tives from an older generation at so young an age due to lung disease,

just thought it must have been TB. The carrier rate in Ireland is very

high, and the rest you can imagine. I think that they were more than

halfway through the lot of the kids before anyone even suggested cf,

and then it was not taken seriously--so no one got decent medical care,

and only one lived most of his life after the possibility of some genetic

identification--and never had it--just could not bring themselves to go

clear into Portland to get that blood drawn--just too far--not bad parents,

just did not have a clue as to the significance that it might make.

They are still together, had always gotten on well, and are only a bit ol

der than I, but look years older. I still keep in touch with them--partly be

cause they do not have anyone else left in the usa.

Love,

n

[Guest guest]

Wow...did both parents have CF, or were they only carriers? Just the odds on

all 9 kids having CF is so low if they were carriers...but somewhat better if

they actually had CF themselves.

Shanna

mom of Triana, age 2 wcf

Re: I can never believe that doctors say things

Sure. . .but I met them in Pendleton, Oregon when their youngest son

and I had the same doctor. Kid died in 1988. Parents were both from

Ireland, did not know diddly about medical care, why they had lost rela

tives from an older generation at so young an age due to lung disease,

just thought it must have been TB. The carrier rate in Ireland is very

high, and the rest you can imagine. I think that they were more than

halfway through the lot of the kids before anyone even suggested cf,

and then it was not taken seriously--so no one got decent medical care,

and only one lived most of his life after the possibility of some genetic

identification--and never had it--just could not bring themselves to go

clear into Portland to get that blood drawn--just too far--not bad parents,

just did not have a clue as to the significance that it might make.

They are still together, had always gotten on well, and are only a bit ol

der than I, but look years older. I still keep in touch with them--partly be

cause they do not have anyone else left in the usa.

Love,

n

[Guest guest]

Margo,

I LIVE IN PASCO AND ALSO GO TO SPOKANE CLINIC ,SMALL WORLD HUH? MY SON IS 19

MONTHS OLD AND WAS BORN AT KADLEC AND AIRLIFTED TO SACRED HEART IN SPOKANE WHERE

HE HAD A COLOSTOMY (MECONUIM ILIUS) AT 12 HRS OLD.SPENT 2 MONTHS THERE. I GREW

UP IN SPOKANE AND HAVE FAMILY THERE, SO GREAT SUPPORT SYSTEM. HOW OLD IS YOUR

CHILD OR CHILDREN? DID YOU DO THE GREAT STRIDES LAST YEAR IN SPOKANE? NATHAN IS

DOING FAIRLY WELL, ALTHOUGH WE HAVE PSUEDOMONAS RIGHT NOW. RECIEVED OUR VEST

LAST MONTH SO THATS BEEN INTERESTING WITH A TODDLER WITH ALL THE NEBULIZER

TREATMENTS. WELL I WAS EXCITED TO READ YOUR POST SINCE YOU LIVE SO NEAR WHAT IS

IT 45 MINUTES?

TAKE CARE,

AMY MOM TO NATHAN 19 MONTHS WITH CF

Re: I can never believe that doctors say things

---n, they don't live to far from me. I am in Walla Walla, we

go to the CF Clinic in Spokane, didn't know there was one in

Portland. Have gone to Childrens in Seattle before, but way to far

to drive every 3 months.

Margo

In cfparents@y..., Mcesana@a... wrote:

> Sure. . .but I met them in Pendleton, Oregon when their youngest

son

> and I had the same doctor. Kid died in 1988. Parents were both

from

> Ireland, did not know diddly about medical care, why they had lost

rela

> tives from an older generation at so young an age due to lung

disease,

> just thought it must have been TB. The carrier rate in Ireland is

very

> high, and the rest you can imagine. I think that they were more

than

> halfway through the lot of the kids before anyone even suggested

cf,

> and then it was not taken seriously--so no one got decent medical

care,

> and only one lived most of his life after the possibility of some

genetic

> identification--and never had it--just could not bring themselves

to go

> clear into Portland to get that blood drawn--just too far--not bad

parents,

> just did not have a clue as to the significance that it might make.

> They are still together, had always gotten on well, and are only a

bit ol

> der than I, but look years older. I still keep in touch with them-

-partly be

> cause they do not have anyone else left in the usa.

> Love,

> n

>

>

>

[Guest guest]

Margo,

I LIVE IN PASCO AND ALSO GO TO SPOKANE CLINIC ,SMALL WORLD HUH? MY SON IS 19

MONTHS OLD AND WAS BORN AT KADLEC AND AIRLIFTED TO SACRED HEART IN SPOKANE WHERE

HE HAD A COLOSTOMY (MECONUIM ILIUS) AT 12 HRS OLD.SPENT 2 MONTHS THERE. I GREW

UP IN SPOKANE AND HAVE FAMILY THERE, SO GREAT SUPPORT SYSTEM. HOW OLD IS YOUR

CHILD OR CHILDREN? DID YOU DO THE GREAT STRIDES LAST YEAR IN SPOKANE? NATHAN IS

DOING FAIRLY WELL, ALTHOUGH WE HAVE PSUEDOMONAS RIGHT NOW. RECIEVED OUR VEST

LAST MONTH SO THATS BEEN INTERESTING WITH A TODDLER WITH ALL THE NEBULIZER

TREATMENTS. WELL I WAS EXCITED TO READ YOUR POST SINCE YOU LIVE SO NEAR WHAT IS

IT 45 MINUTES?

TAKE CARE,

AMY MOM TO NATHAN 19 MONTHS WITH CF

Re: I can never believe that doctors say things

---n, they don't live to far from me. I am in Walla Walla, we

go to the CF Clinic in Spokane, didn't know there was one in

Portland. Have gone to Childrens in Seattle before, but way to far

to drive every 3 months.

Margo

In cfparents@y..., Mcesana@a... wrote:

> Sure. . .but I met them in Pendleton, Oregon when their youngest

son

> and I had the same doctor. Kid died in 1988. Parents were both

from

> Ireland, did not know diddly about medical care, why they had lost

rela

> tives from an older generation at so young an age due to lung

disease,

> just thought it must have been TB. The carrier rate in Ireland is

very

> high, and the rest you can imagine. I think that they were more

than

> halfway through the lot of the kids before anyone even suggested

cf,

> and then it was not taken seriously--so no one got decent medical

care,

> and only one lived most of his life after the possibility of some

genetic

> identification--and never had it--just could not bring themselves

to go

> clear into Portland to get that blood drawn--just too far--not bad

parents,

> just did not have a clue as to the significance that it might make.

> They are still together, had always gotten on well, and are only a

bit ol

> der than I, but look years older. I still keep in touch with them-

-partly be

> cause they do not have anyone else left in the usa.

> Love,

> n

>

>

>

[Guest guest]

Margo,

I LIVE IN PASCO AND ALSO GO TO SPOKANE CLINIC ,SMALL WORLD HUH? MY SON IS 19

MONTHS OLD AND WAS BORN AT KADLEC AND AIRLIFTED TO SACRED HEART IN SPOKANE WHERE

HE HAD A COLOSTOMY (MECONUIM ILIUS) AT 12 HRS OLD.SPENT 2 MONTHS THERE. I GREW

UP IN SPOKANE AND HAVE FAMILY THERE, SO GREAT SUPPORT SYSTEM. HOW OLD IS YOUR

CHILD OR CHILDREN? DID YOU DO THE GREAT STRIDES LAST YEAR IN SPOKANE? NATHAN IS

DOING FAIRLY WELL, ALTHOUGH WE HAVE PSUEDOMONAS RIGHT NOW. RECIEVED OUR VEST

LAST MONTH SO THATS BEEN INTERESTING WITH A TODDLER WITH ALL THE NEBULIZER

TREATMENTS. WELL I WAS EXCITED TO READ YOUR POST SINCE YOU LIVE SO NEAR WHAT IS

IT 45 MINUTES?

TAKE CARE,

AMY MOM TO NATHAN 19 MONTHS WITH CF

Re: I can never believe that doctors say things

---n, they don't live to far from me. I am in Walla Walla, we

go to the CF Clinic in Spokane, didn't know there was one in

Portland. Have gone to Childrens in Seattle before, but way to far

to drive every 3 months.

Margo

In cfparents@y..., Mcesana@a... wrote:

> Sure. . .but I met them in Pendleton, Oregon when their youngest

son

> and I had the same doctor. Kid died in 1988. Parents were both

from

> Ireland, did not know diddly about medical care, why they had lost

rela

> tives from an older generation at so young an age due to lung

disease,

> just thought it must have been TB. The carrier rate in Ireland is

very

> high, and the rest you can imagine. I think that they were more

than

> halfway through the lot of the kids before anyone even suggested

cf,

> and then it was not taken seriously--so no one got decent medical

care,

> and only one lived most of his life after the possibility of some

genetic

> identification--and never had it--just could not bring themselves

to go

> clear into Portland to get that blood drawn--just too far--not bad

parents,

> just did not have a clue as to the significance that it might make.

> They are still together, had always gotten on well, and are only a

bit ol

> der than I, but look years older. I still keep in touch with them-

-partly be

> cause they do not have anyone else left in the usa.

> Love,

> n

>

>

>

[Guest guest]

margo,

im a libra too

amy

Re: I can never believe that doctors say things

---n, they don't live to far from me. I am in Walla Walla, we

go to the CF Clinic in Spokane, didn't know there was one in

Portland. Have gone to Childrens in Seattle before, but way to far

to drive every 3 months.

Margo

In cfparents@y..., Mcesana@a... wrote:

> Sure. . .but I met them in Pendleton, Oregon when their youngest

son

> and I had the same doctor. Kid died in 1988. Parents were both

from

> Ireland, did not know diddly about medical care, why they had lost

rela

> tives from an older generation at so young an age due to lung

disease,

> just thought it must have been TB. The carrier rate in Ireland is

very

> high, and the rest you can imagine. I think that they were more

than

> halfway through the lot of the kids before anyone even suggested

cf,

> and then it was not taken seriously--so no one got decent medical

care,

> and only one lived most of his life after the possibility of some

genetic

> identification--and never had it--just could not bring themselves

to go

> clear into Portland to get that blood drawn--just too far--not bad

parents,

> just did not have a clue as to the significance that it might make.

> They are still together, had always gotten on well, and are only a

bit ol

> der than I, but look years older. I still keep in touch with them-

-partly be

> cause they do not have anyone else left in the usa.

> Love,

> n

>

>

>

[Guest guest]

margo,

im a libra too

amy

Re: I can never believe that doctors say things

---n, they don't live to far from me. I am in Walla Walla, we

go to the CF Clinic in Spokane, didn't know there was one in

Portland. Have gone to Childrens in Seattle before, but way to far

to drive every 3 months.

Margo

In cfparents@y..., Mcesana@a... wrote:

> Sure. . .but I met them in Pendleton, Oregon when their youngest

son

> and I had the same doctor. Kid died in 1988. Parents were both

from

> Ireland, did not know diddly about medical care, why they had lost

rela

> tives from an older generation at so young an age due to lung

disease,

> just thought it must have been TB. The carrier rate in Ireland is

very

> high, and the rest you can imagine. I think that they were more

than

> halfway through the lot of the kids before anyone even suggested

cf,

> and then it was not taken seriously--so no one got decent medical

care,

> and only one lived most of his life after the possibility of some

genetic

> identification--and never had it--just could not bring themselves

to go

> clear into Portland to get that blood drawn--just too far--not bad

parents,

> just did not have a clue as to the significance that it might make.

> They are still together, had always gotten on well, and are only a

bit ol

> der than I, but look years older. I still keep in touch with them-

-partly be

> cause they do not have anyone else left in the usa.

> Love,

> n

>

>

>