Re: CF GUYcf continues; healthy lungs thrive!

[Guest guest]

I would disagree here; they may not have cf in their lungs, but they still

have

it in every cell of their bodies elsewhere: pancreas, liver, gall bladder,

sweat

glands, tears--every cell, and if they were DNA tested today they would test

positive for the same alleles they had before, and probably the same sweat

chloride results. I got this information from a transplant co-ordinator in

the

mid-west and from Stanford, so I'm pretty confident. Also Joanne Schum's

chat for tx pre and post, 2nd Wind, will tell you the same thing. I hope this

not lead anyone to think that transplant is not life-saving and

life-prolonging;

it is, for sure. But they are still at risk for diabetes, reflux,

esophogitis--all the

stuff we all are at risk for--gall bladder disease; the difference is that

the lungs are essential each minute; they are also the only internal part of

the

body directly exposed to outside air--other than nasal passages and sinuses,

and therefore must be protected; also, anti-rejection drugs are essential and

pose their own risks. If I needed a transplant, I like to think that I would

have gone for it when younger, and I have sever friends who are listed whose

primary and catastrophic illness is pulmonary--forget all the rest!

n Rojas who has now probably confused everyone!

[Guest guest]

n,

I meant to say they are not seen at cf clinic's as they are not classed as

cf patients in the hsp. Yes they still take enzymes and one still has loads

of sinus problems with polyps I think, but there lungs are so good. One of

them had 'domino man' had heart & lungs from one guy who was dead obviously

and the cfer'f heart went to someone else so it was a three person

transplant. That's why he's the domino man (he actually has a t-shirt

saying it). I sure hope if and when Eilish needs one she does just as

good, but as these guys said they should do much better as these guys didnt

have enzymes when growing up and due to that they are not tall, about 5foot

5.

Re: CF GUYcf continues; healthy lungs thrive!

> I would disagree here; they may not have cf in their lungs, but they still

> have

> it in every cell of their bodies elsewhere: pancreas, liver, gall bladder,

> sweat

> glands, tears--every cell, and if they were DNA tested today they would

test

> positive for the same alleles they had before, and probably the same sweat

> chloride results. I got this information from a transplant co-ordinator

in

> the

> mid-west and from Stanford, so I'm pretty confident. Also Joanne Schum's

> chat for tx pre and post, 2nd Wind, will tell you the same thing. I hope

this

> not lead anyone to think that transplant is not life-saving and

> life-prolonging;

> it is, for sure. But they are still at risk for diabetes, reflux,

> esophogitis--all the

> stuff we all are at risk for--gall bladder disease; the difference is that

> the lungs are essential each minute; they are also the only internal part

of

> the

> body directly exposed to outside air--other than nasal passages and

sinuses,

> and therefore must be protected; also, anti-rejection drugs are essential

and

> pose their own risks. If I needed a transplant, I like to think that I

would

> have gone for it when younger, and I have sever friends who are listed

whose

> primary and catastrophic illness is pulmonary--forget all the rest!

> n Rojas who has now probably confused everyone!

>

>

>