Question

September 18, 2001

April,

Yes you can give blood. Cf affects nothing but your child/ren, so line up

and be brave LOL.

question

> ok, i was watching all the things on tv about the red cross needing blood

and i was just wondering if anyone knew if you do not have cf, but you do

carry the gene, can you still give blood? or would even just being a carrier

affect things? i know its not catchy hahaha, but can you still help out by

donating blood? sorry, i know its a silly question, just wondering.

>

> April Dewell 29nocf

> mom of Chad H 10wcf

> and Terrance 7nocf

>

September 18, 2001

No problem, even pwcf could donate blood, if they are in good shape.

The blood is one of the few things, that are not affected by the

defect CFTR channel.

Peace

Torsten

> ok, i was watching all the things on tv about the red cross needing

blood and i was just wondering if anyone knew if you do not have cf,

but you do carry the gene, can you still give blood? or would even

just being a carrier affect things? i know its not catchy hahaha, but

can you still help out by donating blood? sorry, i know its a silly

question, just wondering.

>

> April Dewell 29nocf

> mom of Chad H 10wcf

> and Terrance 7nocf

>

September 18, 2001

Torsten,

I donate on a regular basis and was shown by a nurse Red Cross

documentation stating that PWCF *cannot* donate - It was around the time of

the Great Strides walk and she and I struck up a conversation about CF.

I did see on TV the other night that they were accepting donations from

folks that had been in remission from cancer at least 5 years.

, Momma to (3yow/cf)

aberdeen95@... on 09/18/2001 09:16:25 AM

Please respond to cfparents

To: cfparents

cc:

Subject: Re: question

No problem, even pwcf could donate blood, if they are in good shape.

The blood is one of the few things, that are not affected by the

defect CFTR channel.

Peace

Torsten

> ok, i was watching all the things on tv about the red cross needing

blood and i was just wondering if anyone knew if you do not have cf,

but you do carry the gene, can you still give blood? or would even

just being a carrier affect things? i know its not catchy hahaha, but

can you still help out by donating blood? sorry, i know its a silly

question, just wondering.

>

> April Dewell 29nocf

> mom of Chad H 10wcf

> and Terrance 7nocf

>

September 18, 2001

I have given blood many times. CF gene is not in our blood it is in our

genes. Deb

September 18, 2001

April

That is a very good question. I believe that since you have to be born with

it, it shouldn't pose a problem, but check with your cf center.

shannon k

>

>Reply-To: cfparents

>To: cfparents >

>CC: " Cystic-L " CYSTIC-L@...>

>Subject: question

>Date: Tue, 18 Sep 2001 00:14:53 -0700

>

>ok, i was watching all the things on tv about the red cross needing blood

>and i was just wondering if anyone knew if you do not have cf, but you do

>carry the gene, can you still give blood? or would even just being a

>carrier affect things? i know its not catchy hahaha, but can you still help

>out by donating blood? sorry, i know its a silly question, just wondering.

>

>April Dewell 29nocf

>mom of Chad H 10wcf

>and Terrance 7nocf

>

September 18, 2001

Hi April,

I am a carrier and have been donating blood for 2

years. They say no problem..

You'll be glad you did..

Take care,

Cathy

--- April Dewell adewell@...> wrote:

> ok, i was watching all the things on tv about the

> red cross needing blood and i was just wondering if

> anyone knew if you do not have cf, but you do carry

> the gene, can you still give blood? or would even

> just being a carrier affect things? i know its not

> catchy hahaha, but can you still help out by

> donating blood? sorry, i know its a silly question,

> just wondering.

>

> April Dewell 29nocf

> mom of Chad H 10wcf

> and Terrance 7nocf

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

Terrorist Attacks on U.S. - How can you help?

Donate cash, emergency relief information

http://dailynews.yahoo.com/fc/US/Emergency_Information/

September 18, 2001

I gave blood about two weeks ago and I have wondered several times why

they ask as one of the questions if you have a serious illness which

affects your lungs so ... I asked.

The nurse that I spoke to said that people with problems with their lungs

need as many red blood cells as they can to properly carry oxygen to

their lungs. As a result, giving blood would decrease the amount of red

blood cells and would therefore comprise their health. Those of us who

are carriers and do not have CF would obviously not be affected by this

because our lungs are fine.

I have given many, many times. I feel it's my duty since I underwent a

complete transfusion twice the night I was born to keep me alive (RH

factor baby). There is definately no problem with carriers giving blood.

- mother to Emma 14 months w/cf and Isabelle 3 years wo/cf

________________________________________________________________

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January 9, 2002

PFT - Pulmonary Functioning Test - can be done at age 5........

Rosemary in NY

February 21, 2002

Karrie,

Peribrochial inflammatory disease is not like a disease, like CF. It means

it is a diseased state of the lung tissue. Peri- means around, bronchial-means

the bronci and I think you know what inflammatory disease means. So it was an

inflamed state of her bronchial airways that probably resolved when the

pneumonia did. My daughter has had peribronchial thickening on her chest X-ray.

that simply means the airways have been inflamed, and probably for a while,

enough where the tissue is actually thickened.

Hope this helps.

Love,

P.S. glad your persistence has finally started to pay off (with the military)

Question

When Abby was at Duke University when she was 6 months old they were trying to

find out what was keeping her from growing. We already knew that she had severe

GE Reflux but they did some other tests before testing her for that. When she

was admitted she had pneumonia. I don't recall them telling us about that nor

does her father. But anyway then they tested her stools for fat content and

found that they were elevated. I guess with the reflux, pneumonia and elevated

fats in her stool it caused them to test her for Cystic Fibrosis. The sweat

test came back negative. But from what I have read a sweat test in infancy

isn't very reliable because they produce very little sweat. I am wondering why

they didn't do a blood test for CF. They have a CF center, why wouldn't they

have thought to do that? It was also in the records that she had diarrhea the

whole time she was in there and before and they were green. They never did

investigate the diarrhea and it continued after her discharge. So my memory was

right that she has had diarrhea since birth. She also had another case of

pneumonia in 2000 that her father didn't tell me about. Apparently this time it

was worse. And it said that she had Peribronchial inflammatory disease with

left lobe pneumonia. Does anyone know what peribronchial inflammatory disease

is? I tried finding it online but couldn't. Has anyone else had a sweat test

done in infancy that turned out negative and then tested positive later on? CF

certainly makes even more sense now than it did before. I just can't believe no

other doctor she has seen ever thought to test her for it. No doctor has had

the Duke records though and her father didn't tell the doctors she saw about her

stools.

Karrie mother to Chasity age 6 1/2, normal and healthy and Abby age 4 1/2

microcephaly, severe developmental and physical delays, epilepsy, pachygyria,

Congenital CMV and possible Cystic Fibrosis. The list is growing.

www.clik.to/abigail

February 21, 2002

Karrie, when you were asking about the initials DWPST,

and my mom couldn't answer for the whole thing. Now

that you mention the tests Abby had some of the

suggestions she gave me might fit. Basically DW and

PST do not belong together. So she read me a long

list of DW's and PST's. Out of the long list she gave

me the most likely for the DW is dextrose water, which

they do give infants, and for the PST either a

Pancreatic Supression Test, or because of the

pnuemonia, it could be Pennicillian, Steptamyacin,

Tetracycline. So your wierd combo of DWPST is

probably a transcription error.

I hope that it helps some,

Dawn mom of 4, 6 and under, the youngest wcf

--- & Karrie mpwife00@...> wrote:

> When Abby was at Duke University when she was 6

> months old they were trying to find out what was

> keeping her from growing. We already knew that she

> had severe GE Reflux but they did some other tests

> before testing her for that. When she was admitted

> she had pneumonia. I don't recall them telling us

> about that nor does her father. But anyway then

> they tested her stools for fat content and found

> that they were elevated. I guess with the reflux,

> pneumonia and elevated fats in her stool it caused

> them to test her for Cystic Fibrosis. The sweat

> test came back negative. But from what I have read

> a sweat test in infancy isn't very reliable because

> they produce very little sweat. I am wondering why

> they didn't do a blood test for CF. They have a CF

> center, why wouldn't they have thought to do that?

> It was also in the records that she had diarrhea the

> whole time she was in there and before and they were

> green. They never did investigate the diarrhea and

> it continued after her discharge. So my memory was

> right that she has had diarrhea since birth. She

> also had another case of pneumonia in 2000 that her

> father didn't tell me about. Apparently this time

> it was worse. And it said that she had

> Peribronchial inflammatory disease with left lobe

> pneumonia. Does anyone know what peribronchial

> inflammatory disease is? I tried finding it online

> but couldn't. Has anyone else had a sweat test done

> in infancy that turned out negative and then tested

> positive later on? CF certainly makes even more

> sense now than it did before. I just can't believe

> no other doctor she has seen ever thought to test

> her for it. No doctor has had the Duke records

> though and her father didn't tell the doctors she

> saw about her stools.

>

> Karrie mother to Chasity age 6 1/2, normal and

> healthy and Abby age 4 1/2 microcephaly, severe

> developmental and physical delays, epilepsy,

> pachygyria, Congenital CMV and possible Cystic

> Fibrosis. The list is growing.

> www.clik.to/abigail

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

February 21, 2002

Thanks Dawn.

Karrie mother to Chasity age 6 1/2, normal and healthy and Abby age 4 1/2

microcephaly, severe developmental and physical delays, epilepsy,

pachygyria, Congenital CMV and possible Cystic Fibrosis. The list is

growing.

www.clik.to/abigail

Re: Question

> Karrie, when you were asking about the initials DWPST,

> and my mom couldn't answer for the whole thing. Now

> that you mention the tests Abby had some of the

> suggestions she gave me might fit. Basically DW and

> PST do not belong together. So she read me a long

> list of DW's and PST's. Out of the long list she gave

> me the most likely for the DW is dextrose water, which

> they do give infants, and for the PST either a

> Pancreatic Supression Test, or because of the

> pnuemonia, it could be Pennicillian, Steptamyacin,

> Tetracycline. So your wierd combo of DWPST is

> probably a transcription error.

>

> I hope that it helps some,

> Dawn mom of 4, 6 and under, the youngest wcf

> --- & Karrie mpwife00@...> wrote:

> > When Abby was at Duke University when she was 6

> > months old they were trying to find out what was

> > keeping her from growing. We already knew that she

> > had severe GE Reflux but they did some other tests

> > before testing her for that. When she was admitted

> > she had pneumonia. I don't recall them telling us

> > about that nor does her father. But anyway then

> > they tested her stools for fat content and found

> > that they were elevated. I guess with the reflux,

> > pneumonia and elevated fats in her stool it caused

> > them to test her for Cystic Fibrosis. The sweat

> > test came back negative. But from what I have read

> > a sweat test in infancy isn't very reliable because

> > they produce very little sweat. I am wondering why

> > they didn't do a blood test for CF. They have a CF

> > center, why wouldn't they have thought to do that?

> > It was also in the records that she had diarrhea the

> > whole time she was in there and before and they were

> > green. They never did investigate the diarrhea and

> > it continued after her discharge. So my memory was

> > right that she has had diarrhea since birth. She

> > also had another case of pneumonia in 2000 that her

> > father didn't tell me about. Apparently this time

> > it was worse. And it said that she had

> > Peribronchial inflammatory disease with left lobe

> > pneumonia. Does anyone know what peribronchial

> > inflammatory disease is? I tried finding it online

> > but couldn't. Has anyone else had a sweat test done

> > in infancy that turned out negative and then tested

> > positive later on? CF certainly makes even more

> > sense now than it did before. I just can't believe

> > no other doctor she has seen ever thought to test

> > her for it. No doctor has had the Duke records

> > though and her father didn't tell the doctors she

> > saw about her stools.

> >

> > Karrie mother to Chasity age 6 1/2, normal and

> > healthy and Abby age 4 1/2 microcephaly, severe

> > developmental and physical delays, epilepsy,

> > pachygyria, Congenital CMV and possible Cystic

> > Fibrosis. The list is growing.

> > www.clik.to/abigail

> >

> > [Non-text portions of this message have been

> > removed]

> >

>

> __________________________________________________

>

February 21, 2002

Thanks for the info. . I didn't think that it was actually a disease,

I just didn't know what it meant.

Karrie mother to Chasity age 6 1/2, normal and healthy and Abby age 4 1/2

microcephaly, severe developmental and physical delays, epilepsy,

pachygyria, Congenital CMV and possible Cystic Fibrosis. The list is

growing.

www.clik.to/abigail

Question

>

> When Abby was at Duke University when she was 6 months old they were

trying to find out what was keeping her from growing. We already knew that

she had severe GE Reflux but they did some other tests before testing her

for that. When she was admitted she had pneumonia. I don't recall them

telling us about that nor does her father. But anyway then they tested her

stools for fat content and found that they were elevated. I guess with the

reflux, pneumonia and elevated fats in her stool it caused them to test her

for Cystic Fibrosis. The sweat test came back negative. But from what I

have read a sweat test in infancy isn't very reliable because they produce

very little sweat. I am wondering why they didn't do a blood test for CF.

They have a CF center, why wouldn't they have thought to do that? It was

also in the records that she had diarrhea the whole time she was in there

and before and they were green. They never did investigate the diarrhea and

it continued after her discharge. So my memory was right that she has had

diarrhea since birth. She also had another case of pneumonia in 2000 that

her father didn't tell me about. Apparently this time it was worse. And it

said that she had Peribronchial inflammatory disease with left lobe

pneumonia. Does anyone know what peribronchial inflammatory disease is? I

tried finding it online but couldn't. Has anyone else had a sweat test done

in infancy that turned out negative and then tested positive later on? CF

certainly makes even more sense now than it did before. I just can't believe

no other doctor she has seen ever thought to test her for it. No doctor has

had the Duke records though and her father didn't tell the doctors she saw

about her stools.

>

> Karrie mother to Chasity age 6 1/2, normal and healthy and Abby age 4 1/2

microcephaly, severe developmental and physical delays, epilepsy,

pachygyria, Congenital CMV and possible Cystic Fibrosis. The list is

growing.

> www.clik.to/abigail

>

February 21, 2002

Hi Karrie,

I hope that everything will turn to the better now when you are back in the

US.

Although healthy Fiona has peribronchial wall thickening and we were told

that this is due to the persistant inflammation in the lung of a CF kid. So

unfortunately this fits into the whole picture for Abby.

Good luck for your whole family!

Peace

Torsten, dad of Fiona 4wcf

e-mail: torstenkrafft@...