Re: Keeping Children Healthy/PBS special on CF

[Guest guest]

I'm one to own up to my mistakes. While the Keeping Kids Healthy show WAS on

PBS, I think it was probably only in this area. I went to the Montefiore website

(show sponsors) and they are linked with WNET which is channel 13 out of NY so

I'm guessing the tri-state area of NY, NY and CT are the ones that got to view

it. Sorry about that.

http://montekids.org/kkh/ This is the homepage for Keeping Kids Healthy. If you

click on either previous shows or upcoming shows there's a link to Order a Show.

That area is under construction, but I'm sure if you check back, periodically,

they will have a tape available for this show.

I agree with what said, below, about the show.

Sorry about the confusion.

Love,

Jill

Keeping Children Healthy/PBS special on CF

I did watch the special - I thought it was a very realistic " day in the

life " of a young, 26 year old woman with CF and another man, age 40,

who has had a lung transplant. 3 of his siblings died earlier in life

from CF, one after a double lung transplant. He lives a full life but

takes over 30 pills a day (to combat organ rejection) and also 5 shots

of insulin per day as he has become diabetic after the transplant. I

did not realize that diabetes is very common after a lung transplant

for CF patients.

Another interesting fact is that the young girl was doing very well -

she graduated from college and worked for Lehman brothers- then one

year she MISSED HER FLU VACCINE, caught the flu, which progressed to

pneumonia, and it's been downhill from there. Her doctor recommends

she be listed for a transplant because her PFTs are under 30% expected

capacity. I did not know this was the marker. That was a big lesson

to me on the importance of the flu vaccine.

The show also followed the young woman (I'm horrified that I forget her

name) through her vest treatments, nebs, doctor's visit, etc., and now

she is on disability. This was a great show for people who think " oh,

they're doing fine, they look good " because clearly it takes a lot of

work to look good.

It was also heartbreaking - I definitely teared through the second part

of the show - when the girl broke down because she her doc wanted her

to be listed for a transplant, and also when the mother spoke of her

daughter suffering.

The hostess was a little too chipper for me but she did ask some very

tough and sensitive questions - for that I admire her.

Krishnan

Mom to Santosh, 6wcf and Leela, 4wocf

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

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[Guest guest]

BTW, the girl's name is Kim Bene; her mom was on, as well. The tranplant

recipient's name is Cross. They also had a cf specialist named Joan De

Celie Germana, MD.

Jill

Keeping Children Healthy/PBS special on CF

I did watch the special - I thought it was a very realistic " day in the

life " of a young, 26 year old woman with CF and another man, age 40,

who has had a lung transplant. 3 of his siblings died earlier in life

from CF, one after a double lung transplant. He lives a full life but

takes over 30 pills a day (to combat organ rejection) and also 5 shots

of insulin per day as he has become diabetic after the transplant. I

did not realize that diabetes is very common after a lung transplant

for CF patients.

Another interesting fact is that the young girl was doing very well -

she graduated from college and worked for Lehman brothers- then one

year she MISSED HER FLU VACCINE, caught the flu, which progressed to

pneumonia, and it's been downhill from there. Her doctor recommends

she be listed for a transplant because her PFTs are under 30% expected

capacity. I did not know this was the marker. That was a big lesson

to me on the importance of the flu vaccine.

The show also followed the young woman (I'm horrified that I forget her

name) through her vest treatments, nebs, doctor's visit, etc., and now

she is on disability. This was a great show for people who think " oh,

they're doing fine, they look good " because clearly it takes a lot of

work to look good.

It was also heartbreaking - I definitely teared through the second part

of the show - when the girl broke down because she her doc wanted her

to be listed for a transplant, and also when the mother spoke of her

daughter suffering.

The hostess was a little too chipper for me but she did ask some very

tough and sensitive questions - for that I admire her.

Krishnan

Mom to Santosh, 6wcf and Leela, 4wocf

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

------------------------------------------------------------------------------

[Guest guest]

Sounds like it was a good show, thanks for the summary! I'll have to

look into getting a tape of it.

Thanks again,

Keeping Children Healthy/PBS special on CF

I did watch the special - I thought it was a very realistic " day in the

life " of a young, 26 year old woman with CF and another man, age 40,

who has had a lung transplant. 3 of his siblings died earlier in life

from CF, one after a double lung transplant. He lives a full life but

takes over 30 pills a day (to combat organ rejection) and also 5 shots

of insulin per day as he has become diabetic after the transplant. I

did not realize that diabetes is very common after a lung transplant

for CF patients.

Another interesting fact is that the young girl was doing very well -

she graduated from college and worked for Lehman brothers- then one

year she MISSED HER FLU VACCINE, caught the flu, which progressed to

pneumonia, and it's been downhill from there. Her doctor recommends

she be listed for a transplant because her PFTs are under 30% expected

capacity. I did not know this was the marker. That was a big lesson

to me on the importance of the flu vaccine.

The show also followed the young woman (I'm horrified that I forget her

name) through her vest treatments, nebs, doctor's visit, etc., and now

she is on disability. This was a great show for people who think " oh,

they're doing fine, they look good " because clearly it takes a lot of

work to look good.

It was also heartbreaking - I definitely teared through the second part

of the show - when the girl broke down because she her doc wanted her

to be listed for a transplant, and also when the mother spoke of her

daughter suffering.

The hostess was a little too chipper for me but she did ask some very

tough and sensitive questions - for that I admire her.

Krishnan

Mom to Santosh, 6wcf and Leela, 4wocf

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

------------------------------------

[Guest guest]

- was the 40 year old from Long Island?

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

my new favorite quote is

Any idiot can face a crisis -

it's day to day living that wears you out.

Anton Chekhov