Re: Genetic testing for IPF

[Guest guest]

Hi Jean... I didn't know either that fibrosis can be in the heart tissue. Yeek.

I can't remember, have you applied for Disability and/or SSI? If not will you?

We have our financial concerns too but handle it well. Now that we live in subsidized apt it makes a huge difference. Our rent is based on our income. Is there anything similar there for you perhaps? I hope so. If so, do check them out and pick one and get on the waiting list.

Take care Jean.

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

Genetic testing for IPF

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]

Jeam, you would be eligible for elderly susidized housing based on your disability. Your rent is 30% of your adjusted income. For example, is your adjusted annual income is $4,000.00, your rent would be $100 per month. Typically, you would pay your utilities. For this, there is an utility allowance. If the average monthly utiility cost for your size apartment is $50.00 a month, that is subtracted from your rent.

Thus in our example, your cash rent is $50.00 a month. If you are frugal and keep your utility costs down and pay less than the $50.00, you gain. It you are not careful with utilities and the cost is greater than $50.00, you lose.

You are also eligible for family subsidized housing, but the senior housing is calmer. The same rules for determing rent are the same. "Adjusted Income" means that all of your medical expenses, including mileage for travelling for health reasons, in-house care, etc., is subtracted from your income in determining your rent.

If you were living in Maine, I would set you up in one of my projects, as long as you don't use illegal drugs, get drunk and noisy, have wild parties, or beat up your boyfriend.

Jack

79/UIP - IPF/06/05 Maine

Genetic testing for IPF

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]

have you tried AARP? You're eligible at age 50 for their

insurance. I don't know how good it is, but I'm applying in 2 years so

I can use it as my supplemental.

Fibrosis can occur in any organ, even our brains. Who knew, right?

Best of luck, and big hugs!

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

>

[Guest guest]

Jack

We get a $400 allowance right off the top just for being 'elderly'. Whoopee. Our utility allowance is computed in the adjusted income not after it and it's adjusted a bit differently then you explain here.

At any rate, it is a blessing to find good senior housing like we have right now. We stay here because we don't want to go into family housing. What a nightmare...and I love kids...don't anyone get mad here. Also so many of the family communities are not kept up well.

We've been waiting 3 years for a downstairs apt. People just don't move once they are in.

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

Genetic testing for IPF

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...if fibrosis can appear in any organ how is it determined to be there?

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

Re: Genetic testing for IPF

have you tried AARP? You're eligible at age 50 for theirinsurance. I don't know how good it is, but I'm applying in 2 years soI can use it as my supplemental.Fibrosis can occur in any organ, even our brains. Who knew, right?Best of luck, and big hugs!Babs in Texas>> Hi Everybody,> When I learned the outcome of my coronary biopsies revealedfibrosis, my cardiologist, (to whom I had been referred following myfirst catheterization), referred me to a geneticist in the cardiologydepartment.. Labs were drawn to determine the presence of two genesthat are currently identiable as carriers of IPF. There is only a 10%chance, however, that even if I am carrying the genes, that they willshow up as positive. The results will take 6 weeks to 2 months. Thegeneticist was also going to send some blood to a researcher down inTexas 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 thisinformation to my siblings, as well as my children. I had never heardbefore that fibrosis can appear in the heart tissue. I was told thatpersons who might be in their 80's let's say, might present with somefibrosis in their heart tissue. I am 52. I'll let you all> know what I learn. By the way, I applied for disability about twomonths ago, and I've been told that it still may be a while before Ihear. Does anyone know about any additional sites who can providehelp with insurance premiums, etc., because my income will be sodramatically reduced on disability, I don't know how I will make endsmeet. Thank you for your suggestions of modestneeds.com, andcarringvoice.com. I am in process of looking into them. God blessyou all on your journeys, for He cares about you.> Jean>

[Guest guest]

Very simply, with biopsy. OR autopsy.

Babs

> >

> > 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]

Very simply, with biopsy. OR autopsy.

Babs

> >

> > 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]

Very simply, with biopsy. OR autopsy.

Babs

> >

> > 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]

Yeah, yeah, it's the heat!

I manage my pain with pain meds. I go to a pain clinic and they adjust as needed. So many meds I have been allergic to and others have side effects. So I'm getting limited.

Thanks for asking.

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

Re: Genetic testing for IPF

Mama-Sher, here's an interesting tidbit though. My older sister hadendometriosis in the uterus, and was also having a lot of pain in herelbow...and yup, you guessed it, they found the endometrial cells inher elbow!!! I can't remember what they did to fix it but was amazedto 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 brainis foggy a lot more these days...must be the heat. Yeah, yeah, that'sit, 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 referredfollowing my> > > first catheterization), referred me to a geneticist in the> cardiology> > > department.. Labs were drawn to determine the presence of twogenes> > > 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 2months. The> > > geneticist was also going to send some blood to a researcherdown 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 wastold 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 disabilityabout two> > > months ago, and I've been told that it still may be a whilebefore 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]

Yeah, yeah, it's the heat!

I manage my pain with pain meds. I go to a pain clinic and they adjust as needed. So many meds I have been allergic to and others have side effects. So I'm getting limited.

Thanks for asking.

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

Re: Genetic testing for IPF

Mama-Sher, here's an interesting tidbit though. My older sister hadendometriosis in the uterus, and was also having a lot of pain in herelbow...and yup, you guessed it, they found the endometrial cells inher elbow!!! I can't remember what they did to fix it but was amazedto 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 brainis foggy a lot more these days...must be the heat. Yeah, yeah, that'sit, 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 referredfollowing my> > > first catheterization), referred me to a geneticist in the> cardiology> > > department.. Labs were drawn to determine the presence of twogenes> > > 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 2months. The> > > geneticist was also going to send some blood to a researcherdown 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 wastold 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 disabilityabout two> > > months ago, and I've been told that it still may be a whilebefore 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> > > >> > >> >>