Re: Genetic testing for IPF

[Guest guest]

Mama-Sher, remember that fibrosis can also be picked up by CT scan or

MRI...biopsy is usually to confirm.

You can look up " fibrosis " on Wikipedia and it will explain it better

than I ever could, but it's simply a build up of excess fibrous

connective tissue and can occur in many organs, including the brain.

But just because it's in our lungs doesn't necessarily mean it will be

in our heart or brain.

Hope that helped!

Hugs!

Babs in Texas

Oh, and I'm a rose called " Judy Garland "

> > >

> > > Hi Everybody,

> > > When I learned the outcome of my coronary biopsies revealed

> > fibrosis, my cardiologist, (to whom I had been referred following my

> > first catheterization), referred me to a geneticist in the

cardiology

> > department.. Labs were drawn to determine the presence of two genes

> > that are currently identiable as carriers of IPF. There is only

a 10%

> > chance, however, that even if I am carrying the genes, that they

will

> > show up as positive. The results will take 6 weeks to 2 months. The

> > geneticist was also going to send some blood to a researcher down in

> > Texas for further evaluation. As my father died of IPF when I

was 19,

> > she felt it important at this time to do this testing to provide

this

> > information to my siblings, as well as my children. I had never

heard

> > before that fibrosis can appear in the heart tissue. I was told that

> > persons who might be in their 80's let's say, might present with

some

> > fibrosis in their heart tissue. I am 52. I'll let you all

> > > know what I learn. By the way, I applied for disability about two

> > months ago, and I've been told that it still may be a while before I

> > hear. Does anyone know about any additional sites who can provide

> > help with insurance premiums, etc., because my income will be so

> > dramatically reduced on disability, I don't know how I will make

ends

> > meet. Thank you for your suggestions of modestneeds.com, and

> > carringvoice.com. I am in process of looking into them. God bless

> > you all on your journeys, for He cares about you.

> > > Jean

> > >

> >

>

[Guest guest]

Babs...yeah, this time I understood better and I will Google it. I have such a chronic pain problem that I couldn't help but wonder if maybe I have this fibrosis someplace that's causing pain. I know my heart is good 'cause I've had a full cardio workup.

Yes, I know one thing doesn't necessarily mean it will be again.

Thanks.

MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there!

Re: Genetic testing for IPF

Mama-Sher, remember that fibrosis can also be picked up by CT scan orMRI...biopsy is usually to confirm.You can look up "fibrosis" on Wikipedia and it will explain it betterthan I ever could, but it's simply a build up of excess fibrousconnective tissue and can occur in many organs, including the brain.But just because it's in our lungs doesn't necessarily mean it will bein our heart or brain.Hope that helped! :)Hugs!Babs in TexasOh, and I'm a rose called "Judy Garland"> > >> > > Hi Everybody,> > > When I learned the outcome of my coronary biopsies revealed> > fibrosis, my cardiologist, (to whom I had been referred following my> > first catheterization), referred me to a geneticist in thecardiology> > department.. Labs were drawn to determine the presence of two genes> > that are currently identiable as carriers of IPF. There is onlya 10%> > chance, however, that even if I am carrying the genes, that theywill> > show up as positive. The results will take 6 weeks to 2 months. The> > geneticist was also going to send some blood to a researcher down in> > Texas for further evaluation. As my father died of IPF when Iwas 19,> > she felt it important at this time to do this testing to providethis> > information to my siblings, as well as my children. I had neverheard> > before that fibrosis can appear in the heart tissue. I was told that> > persons who might be in their 80's let's say, might present withsome> > fibrosis in their heart tissue. I am 52. I'll let you all> > > know what I learn. By the way, I applied for disability about two> > months ago, and I've been told that it still may be a while before I> > hear. Does anyone know about any additional sites who can provide> > help with insurance premiums, etc., because my income will be so> > dramatically reduced on disability, I don't know how I will makeends> > meet. Thank you for your suggestions of modestneeds.com, and> > carringvoice.com. I am in process of looking into them. God bless> > you all on your journeys, for He cares about you.> > > Jean> > >> >>

[Guest guest]

Mama-Sher, here's an interesting tidbit though. My older sister had

endometriosis in the uterus, and was also having a lot of pain in her

elbow...and yup, you guessed it, they found the endometrial cells in

her elbow!!! I can't remember what they did to fix it but was amazed

to learn that those cells could travel to other parts of the body.

Aren't we all just an amazing and fascinating machine?

How are you managing the pain? You may have said before, but my brain

is foggy a lot more these days...must be the heat. Yeah, yeah, that's

it, it's the heat! LOL!

Hugs to you!

Babs in Texas

> > > >

> > > > Hi Everybody,

> > > > When I learned the outcome of my coronary biopsies revealed

> > > fibrosis, my cardiologist, (to whom I had been referred

following my

> > > first catheterization), referred me to a geneticist in the

> cardiology

> > > department.. Labs were drawn to determine the presence of two

genes

> > > that are currently identiable as carriers of IPF. There is only

> a 10%

> > > chance, however, that even if I am carrying the genes, that they

> will

> > > show up as positive. The results will take 6 weeks to 2

months. The

> > > geneticist was also going to send some blood to a researcher

down in

> > > Texas for further evaluation. As my father died of IPF when I

> was 19,

> > > she felt it important at this time to do this testing to provide

> this

> > > information to my siblings, as well as my children. I had never

> heard

> > > before that fibrosis can appear in the heart tissue. I was

told that

> > > persons who might be in their 80's let's say, might present with

> some

> > > fibrosis in their heart tissue. I am 52. I'll let you all

> > > > know what I learn. By the way, I applied for disability

about two

> > > months ago, and I've been told that it still may be a while

before I

> > > hear. Does anyone know about any additional sites who can provide

> > > help with insurance premiums, etc., because my income will be so

> > > dramatically reduced on disability, I don't know how I will make

> ends

> > > meet. Thank you for your suggestions of modestneeds.com, and

> > > carringvoice.com. I am in process of looking into them. God bless

> > > you all on your journeys, for He cares about you.

> > > > Jean

> > > >

> > >

> >

>