Re: update on medical status

[Guest guest]

I sure hope you can get to see the specialist at the Childrens Hospital. These childrens hospitals are well known for having the cutting edge treatments and research and if anyone can come up with something to slow this disease they should be able to. I would rejoice if someone sent me to one for to me it means they would think there is something that can be done to help. Try to look at this as an optomistic thing. I do and I will be hoping for you dear to have the very best outcome. Carolynjaime wrote: i saw my pulm today. i had a new PFT and a new walk test done.all of my PFT numbers were down, that's not a good sign. also during the walk test my stats went from 97 to 83 and my pulse rate went from 87 to 168!i will be having a new Echocardiogram and High Res

CT scan done on wednesday but i don't see the dr again til april 9th for the results! that sucks!i found out some very interesting facts today that i was not aware of. I did not know that langerhans (eosinophilic granuloma) is not in fact a lung disease at all. it is in fact a very rare blood disease that effects the lungs, liver, spleen, skin and bones. the lungs in my case. even as a blood disease it can not be picked up through a blood test! imagine that!there are only 5 ADULT cases of it throughout the entire state of Texas and i (lucky me) and the only one in the city of houston.my pulm is sending me to see a dr at Texas Children and i was like WHAT?? WHY?? i'm not a child! BUT EG or LCH however you want to refer to it, is his specialty. all of his patients have this disease but are all children. i think i am being swooped in to becoming someone's guinea pig! that i am not too fond of. i do not

have an appt with him yet. he is getting approval from the insurance company...or trying to anyhow.well this is all the news i have for now.i hope this finds you all as well as can be!Love ya!

[Guest guest]

Well you have me scratching my head. You are our baby so don't be upset about the peds dr.

I gotta go read this a dozen or so times..

Love and Prayers, Peggy 9/04 ipf Florida

i saw my pulm today. i had a new PFT and a new walk test done.

all of my PFT numbers were down, that's not a good sign. also during

the walk test my stats went from 97 to 83 and my pulse rate went from

87 to 168!

i will be having a new Echocardiogram and High Res CT scan done on

wednesday but i don't see the dr again til april 9th for the results!

that sucks!

i found out some very interesting facts today that i was not aware

of. I did not know that langerhans (eosinophilic granuloma) is not in

fact a lung disease at all. it is in fact a very rare blood disease

that effects the lungs, liver, spleen, skin and bones. the lungs in

my case. even as a blood disease it can not be picked up through a

blood test! imagine that!

there are only 5 ADULT cases of it throughout the entire state of

Texas and i (lucky me) and the only one in the city of houston.

my pulm is sending me to see a dr at Texas Children and i was like

WHAT?? WHY?? i'm not a child! BUT EG or LCH however you want to

refer to it, is his specialty. all of his patients have this disease

but are all children. i think i am being swooped in to becoming

someone's guinea pig! that i am not too fond of. i do not have an

appt with him yet. he is getting approval from the insurance

company...or trying to anyhow.

well this is all the news i have for now.

i hope this finds you all as well as can be!

Love ya!

[Guest guest]

jaime...how is langerhans detected??

sorry your numbers are not so good right now. I go in on the 16th for another walk, cscan and pft.

God bless ya jaime. Sher

"Don't worry about tomorrow, God is already there"

update on medical status

i saw my pulm today. i had a new PFT and a new walk test done.all of my PFT numbers were down, that's not a good sign. also during the walk test my stats went from 97 to 83 and my pulse rate went from 87 to 168!i will be having a new Echocardiogram and High Res CT scan done on wednesday but i don't see the dr again til april 9th for the results! that sucks!i found out some very interesting facts today that i was not aware of. I did not know that langerhans (eosinophilic granuloma) is not in fact a lung disease at all. it is in fact a very rare blood disease that effects the lungs, liver, spleen, skin and bones. the lungs in my case. even as a blood disease it can not be picked up through a blood test! imagine that!there are only 5 ADULT cases of it throughout the entire state of Texas and i (lucky me) and the only one in the city of houston.my pulm is sending me to see a dr at Texas Children and i was like WHAT?? WHY?? i'm not a child! BUT EG or LCH however you want to refer to it, is his specialty. all of his patients have this disease but are all children. i think i am being swooped in to becoming someone's guinea pig! that i am not too fond of. i do not have an appt with him yet. he is getting approval from the insurance company...or trying to anyhow.well this is all the news i have for now.i hope this finds you all as well as can be!Love ya!

[Guest guest]

,

You can get a copy of the report before then. Call the hospital and tell them you want a copy of both.

My daughter had an MRI a couple of weeks ago. She called the hospital. They said they would only release the copy to her doctor. She told them that those reports were her property, that she paid for them......that she was on her way. If they did not have them ready when she got there she would return with legal representation. They had them ready!

April is way too long to wait. Can you call the doc before then??????

Hugs, Joyce >> i saw my pulm today. i had a new PFT and a new walk test done.> > all of my PFT numbers were down, that's not a good sign. also during > the walk test my stats went from 97 to 83 and my pulse rate went from > 87 to 168!> > i will be having a new Echocardiogram and High Res CT scan done on > wednesday but i don't see the dr again til april 9th for the results! > that sucks!> > i found out some very interesting facts today that i was not aware > of. I did not know that langerhans (eosinophilic granuloma) is not in > fact a lung disease at all. it is in fact a very rare blood disease > that effects the lungs, liver, spleen, skin and bones. the lungs in > my case. even as a blood disease it can not be picked up through a > blood test! imagine that!> > there are only 5 ADULT cases of it throughout the entire state of > Texas and i (lucky me) and the only one in the city of houston.> > my pulm is sending me to see a dr at Texas Children and i was like > WHAT?? WHY?? i'm not a child! BUT EG or LCH however you want to > refer to it, is his specialty. all of his patients have this disease > but are all children. i think i am being swooped in to becoming > someone's guinea pig! that i am not too fond of. i do not have an > appt with him yet. he is getting approval from the insurance > company...or trying to anyhow.> > well this is all the news i have for now.> > i hope this finds you all as well as can be!> > Love ya!> >

[Guest guest]

,

I'm sorry your numbers on your PFT were all down, that's got to be discouraging. On your 6 minute walk were you using O2? Just curious.

I agree with Carolyn about going to the doc at the children's hospital. EG primarily affects children so that's where you're most likely to find the knowledge base for this illness.

I also wouldn't wait till April to get the results of these tests. I'd call the doctor's office or get copies of the reports for myself. You're entitled, they are your results after all. I would in no way be able to wait 3 months knowing the results were sitting in a file at the doctor's office.

By the way, last Thursday was the first time I ever got to hear you sing....You are amazing girl!!! I was in tears when you finished. Thank you so much for sharing your gift with us!

Beth Fibrotic NSIP 06/06

Don't try to explain it, just nod your head.

Breathe in, breathe out. Move on. J. Buffett

update on medical status

i saw my pulm today. i had a new PFT and a new walk test done.all of my PFT numbers were down, that's not a good sign. also during the walk test my stats went from 97 to 83 and my pulse rate went from 87 to 168!i will be having a new Echocardiogram and High Res CT scan done on wednesday but i don't see the dr again til april 9th for the results! that sucks!i found out some very interesting facts today that i was not aware of. I did not know that langerhans (eosinophilic granuloma) is not in fact a lung disease at all. it is in fact a very rare blood disease that effects the lungs, liver, spleen, skin and bones. the lungs in my case. even as a blood disease it can not be picked up through a blood test! imagine that!there are only 5 ADULT cases of it throughout the entire state of Texas and i (lucky me) and the only one in the city of houston.my pulm is sending me to see a dr at Texas Children

and i was like WHAT?? WHY?? i'm not a child! BUT EG or LCH however you want to refer to it, is his specialty. all of his patients have this disease but are all children. i think i am being swooped in to becoming someone's guinea pig! that i am not too fond of. i do not have an appt with him yet. he is getting approval from the insurance company...or trying to anyhow.well this is all the news i have for now.i hope this finds you all as well as can be!Love ya!

[Guest guest]

,

Re: the only one in the city of houston

I knew that you were one of a kind!

It is amazing that they even figured out what you have. I wish your tests had showed improvement, but with treatment maybe that will come. I will continue to pray for you. What a load you carry. You are a brave, brave girl.

How is Nick doing on all his meds. Do they make him more hyper...or was that possible?

Keep fighting young lady!

Hugs to you always,

Joyce PF 1997 Bronchiectasis 2004 INDIANA

>> Well you have me scratching my head. You are our baby so don't be upset> about the peds dr.> I gotta go read this a dozen or so times..> > Love and Prayers, Peggy 9/04 ipf Florida> > i saw my pulm today. i had a new PFT and a new walk test done.> > all of my PFT numbers were down, that's not a good sign. also during> the walk test my stats went from 97 to 83 and my pulse rate went from> 87 to 168!> > i will be having a new Echocardiogram and High Res CT scan done on> wednesday but i don't see the dr again til april 9th for the results!> that sucks!> > i found out some very interesting facts today that i was not aware> of. I did not know that langerhans (eosinophilic granuloma) is not in> fact a lung disease at all. it is in fact a very rare blood disease> that effects the lungs, liver, spleen, skin and bones. the lungs in> my case. even as a blood disease it can not be picked up through a> blood test! imagine that!> > there are only 5 ADULT cases of it throughout the entire state of> Texas and i (lucky me) and the only one in the city of houston.> > my pulm is sending me to see a dr at Texas Children and i was like> WHAT?? WHY?? i'm not a child! BUT EG or LCH however you want to> refer to it, is his specialty. all of his patients have this disease> but are all children. i think i am being swooped in to becoming> someone's guinea pig! that i am not too fond of. i do not have an> appt with him yet. he is getting approval from the insurance> company...or trying to anyhow.> > well this is all the news i have for now.> > i hope this finds you all as well as can be!> > Love ya!> >

[Guest guest]

yes ma'am, they always make me wear the O2 to do the walk test

whether i am short of breath before it starts or not. they did have

me sit down and rest because my heart rate was so high before the

rest just walking from the patient room i was in to the walking area

marked off for the test.

EG 10-05

>

> ,

>

> I'm sorry your numbers on your PFT were all down, that's got to be

discouraging. On your 6 minute walk were you using O2? Just

curious.

>

> I agree with Carolyn about going to the doc at the children's

hospital. EG primarily affects children so that's where you're most

likely to find the knowledge base for this illness.

>

> I also wouldn't wait till April to get the results of these tests.

I'd call the doctor's office or get copies of the reports for

myself. You're entitled, they are your results after all. I would

in no way be able to wait 3 months knowing the results were sitting

in a file at the doctor's office.

>

> By the way, last Thursday was the first time I ever got to hear you

sing....You are amazing girl!!! I was in tears when you finished.

Thank you so much for sharing your gift with us!

>

> Beth Fibrotic NSIP 06/06

>

> Don't try to explain it, just nod your head.

> Breathe in, breathe out. Move on. J. Buffett

>

>

>

> update on medical status

>

> i saw my pulm today. i had a new PFT and a new walk test done.

>

> all of my PFT numbers were down, that's not a good sign. also

during

> the walk test my stats went from 97 to 83 and my pulse rate went

from

> 87 to 168!

>

> i will be having a new Echocardiogram and High Res CT scan done on

> wednesday but i don't see the dr again til april 9th for the

results!

> that sucks!

>

> i found out some very interesting facts today that i was not aware

> of. I did not know that langerhans (eosinophilic granuloma) is not

in

> fact a lung disease at all. it is in fact a very rare blood disease

> that effects the lungs, liver, spleen, skin and bones. the lungs in

> my case. even as a blood disease it can not be picked up through a

> blood test! imagine that!

>

> there are only 5 ADULT cases of it throughout the entire state of

> Texas and i (lucky me) and the only one in the city of houston.

>

> my pulm is sending me to see a dr at Texas Children and i was like

> WHAT?? WHY?? i'm not a child! BUT EG or LCH however you want to

> refer to it, is his specialty. all of his patients have this

disease

> but are all children. i think i am being swooped in to becoming

> someone's guinea pig! that i am not too fond of. i do not have an

> appt with him yet. he is getting approval from the insurance

> company...or trying to anyhow.

>

> well this is all the news i have for now.

>

> i hope this finds you all as well as can be!

>

> Love ya!

>

>

[Guest guest]

well unfortunately langerhans can not be detected until the problems

start. from biospy only is what i was told........the esoinophilic

granules were not discovered until the biopsy was done. (eosinophilic

granuloma is actually the " historical " name for langerhans.

EG 10-05

>

> jaime...how is langerhans detected??

> sorry your numbers are not so good right now. I go in on the 16th

for another walk, cscan and pft.

> God bless ya jaime. Sher

> " Don't worry about tomorrow, God is already there "

> update on medical status

>

>

> i saw my pulm today. i had a new PFT and a new walk test done.

>

> all of my PFT numbers were down, that's not a good sign. also

during

> the walk test my stats went from 97 to 83 and my pulse rate went

from

> 87 to 168!

>

> i will be having a new Echocardiogram and High Res CT scan done

on

> wednesday but i don't see the dr again til april 9th for the

results!

> that sucks!

>

> i found out some very interesting facts today that i was not

aware

> of. I did not know that langerhans (eosinophilic granuloma) is

not in

> fact a lung disease at all. it is in fact a very rare blood

disease

> that effects the lungs, liver, spleen, skin and bones. the lungs

in

> my case. even as a blood disease it can not be picked up through

a

> blood test! imagine that!

>

> there are only 5 ADULT cases of it throughout the entire state of

> Texas and i (lucky me) and the only one in the city of houston.

>

> my pulm is sending me to see a dr at Texas Children and i was

like

> WHAT?? WHY?? i'm not a child! BUT EG or LCH however you want to

> refer to it, is his specialty. all of his patients have this

disease

> but are all children. i think i am being swooped in to becoming

> someone's guinea pig! that i am not too fond of. i do not have an

> appt with him yet. he is getting approval from the insurance

> company...or trying to anyhow.

>

> well this is all the news i have for now.

>

> i hope this finds you all as well as can be!

>

> Love ya!

>

>

[Guest guest]

lol nah! he's not really the hyper one, ashli is! (he's doing great

though!)

nick is a video game/computer geek. as long as his xbox is running,

you can almost always find him in front of it.

now ashli on the other hand, as long as her eyes are open, her feet,

hands and mouth are going too. lol

can't imagine where she gets that from! LOLOL!

eg 10-05

> >

> > Well you have me scratching my head. You are our baby so don't be

> upset

> > about the peds dr.

> > I gotta go read this a dozen or so times..

> >

> > Love and Prayers, Peggy 9/04 ipf Florida

> >

> > i saw my pulm today. i had a new PFT and a new walk test done.

> >

> > all of my PFT numbers were down, that's not a good sign. also

during

> > the walk test my stats went from 97 to 83 and my pulse rate went

from

> > 87 to 168!

> >

> > i will be having a new Echocardiogram and High Res CT scan done on

> > wednesday but i don't see the dr again til april 9th for the

results!

> > that sucks!

> >

> > i found out some very interesting facts today that i was not aware

> > of. I did not know that langerhans (eosinophilic granuloma) is

not in

> > fact a lung disease at all. it is in fact a very rare blood

disease

> > that effects the lungs, liver, spleen, skin and bones. the lungs

in

> > my case. even as a blood disease it can not be picked up through a

> > blood test! imagine that!

> >

> > there are only 5 ADULT cases of it throughout the entire state of

> > Texas and i (lucky me) and the only one in the city of houston.

> >

> > my pulm is sending me to see a dr at Texas Children and i was like

> > WHAT?? WHY?? i'm not a child! BUT EG or LCH however you want to

> > refer to it, is his specialty. all of his patients have this

disease

> > but are all children. i think i am being swooped in to becoming

> > someone's guinea pig! that i am not too fond of. i do not have an

> > appt with him yet. he is getting approval from the insurance

> > company...or trying to anyhow.

> >

> > well this is all the news i have for now.

> >

> > i hope this finds you all as well as can be!

> >

> > Love ya!

> >

> >

>

[Guest guest]

Thanks . All these big words are overwhelming. Sher

"Don't worry about tomorrow, God is already there"

update on medical status> > > i saw my pulm today. i had a new PFT and a new walk test done.> > all of my PFT numbers were down, that's not a good sign. also during > the walk test my stats went from 97 to 83 and my pulse rate went from > 87 to 168!> > i will be having a new Echocardiogram and High Res CT scan done on > wednesday but i don't see the dr again til april 9th for the results! > that sucks!> > i found out some very interesting facts today that i was not aware > of. I did not know that langerhans (eosinophilic granuloma) is not in > fact a lung disease at all. it is in fact a very rare blood disease > that effects the lungs, liver, spleen, skin and bones. the lungs in > my case. even as a blood disease it can not be picked up through a > blood test! imagine that!> > there are only 5 ADULT cases of it throughout the entire state of > Texas and i (lucky me) and the only one in the city of houston.> > my pulm is sending me to see a dr at Texas Children and i was like > WHAT?? WHY?? i'm not a child! BUT EG or LCH however you want to > refer to it, is his specialty. all of his patients have this disease > but are all children. i think i am being swooped in to becoming > someone's guinea pig! that i am not too fond of. i do not have an > appt with him yet. he is getting approval from the insurance > company...or trying to anyhow.> > well this is all the news i have for now.> > i hope this finds you all as well as can be!> > Love ya!> >

[Guest guest]

> >

> > jaime...how is langerhans detected??

> > sorry your numbers are not so good right now. I go in on the 16th

> for another walk, cscan and pft.

> > God bless ya jaime. Sher

> > " Don't worry about tomorrow, God is already there "

> > update on medical status

> >

> >

> > i saw my pulm today. i had a new PFT and a new walk test done.

> >

> > all of my PFT numbers were down, that's not a good sign. also

> during

> > the walk test my stats went from 97 to 83 and my pulse rate

went

> from

> > 87 to 168!

> >

> > i will be having a new Echocardiogram and High Res CT scan done

> on

> > wednesday but i don't see the dr again til april 9th for the

> results!

> > that sucks!

> >

> > i found out some very interesting facts today that i was not

> aware

> > of. I did not know that langerhans (eosinophilic granuloma) is

> not in

> > fact a lung disease at all. it is in fact a very rare blood

> disease

> > that effects the lungs, liver, spleen, skin and bones. the

lungs

> in

> > my case. even as a blood disease it can not be picked up

through

> a

> > blood test! imagine that!

> >

> > there are only 5 ADULT cases of it throughout the entire state

of

> > Texas and i (lucky me) and the only one in the city of houston.

> >

> > my pulm is sending me to see a dr at Texas Children and i was

> like

> > WHAT?? WHY?? i'm not a child! BUT EG or LCH however you want to

> > refer to it, is his specialty. all of his patients have this

> disease

> > but are all children. i think i am being swooped in to becoming

> > someone's guinea pig! that i am not too fond of. i do not have

an

> > appt with him yet. he is getting approval from the insurance

> > company...or trying to anyhow.

> >

> > well this is all the news i have for now.

> >

> > i hope this finds you all as well as can be!

> >

> > Love ya!

> >

> >

>