Re: Cooeee

[Guest guest]

Z, I am so glad to hear from you. Sorry about the pain and additional problems, glad about a new specialist. Really happy you kept your knickers on LOLI sure do hope the treatment isn't prednisone. lol you know me and pred.. How excited was Lili to see Mommy? Keep us posted. Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."

[Guest guest]

Won't take up too much time, just wanted to say glad you're back, you were missed and I love you!

TerTerry Pennisi 11/07 IPF Nevada

Subject: CooeeeTo: Breathe-Support Date: Saturday, July 12, 2008, 6:00 PM

Hello, I'm back I've only just got home and I'm still a little uncomfortable but at least I wasn't left in a room with a strange man and no knickers Tbh, I found it very painful which I was told is rare and considering I have quite a high pain threshold quite surprising.

The results are that I have very mild PAH, possibly too low to bother medicating yet, but it is there and they will keep an eye on me by regular echo's and probably another angio if it deteriorates further.

I have also agreed to be in a study. Some of the docs think that a particular breathing test might detect PAH in fibrosis patients. What they have done is taken this breathing test, which is very easy and involves breathing quickly and deeply in and out of a deflated bladder for 20 seconds. You do this 3 times for them to get an accurate reading. They told me that according to the breathing test I was at the top end of normal, borderline PAH. They then look at these results up against the results of the angio, which as I said showed slight PAH. They are hoping that if the results are consistant (and apparently they're looking good) they can use this to help reduce the need for angio's in patients with lung fibrosis. The machine that they use looks like a small computor monitor with a flat basketball attached to a hose. This

size means that it could be something that the docs have and just test you along with your other pft's. It's considerably quicker than an echo. They are currently in the first phase of the study, which means they need 30 people. If this is successful they can go for funding to increase the amount of people in the trial.

Also, the hospital I was at this week has specialists in lung fibrosis. My doc, while lovely, is a cystic fibrosis specialist, not a pulmonary fibrosis specialist. They are going to transfer me to there. They think a different treatment might be more beneficial to me.

I have a weeks worth of posts to catch up on now so I'll check those out later

Love Ze xx

[Guest guest]

zena

sorry you found it painful.

i'm really glad you're home.

happy birthday.

may uip, 0606

glasgow, scotland

>

>

> Hello, I'm back [] I've only just got home and I'm still a

little

> uncomfortable but at least I wasn't left in a room with a strange

man

> and no knickers [] Tbh, I found it very painful which I was

told is

> rare and considering I have quite a high pain threshold quite

> surprising.

>

> The results are that I have very mild PAH, possibly too low to

bother

> medicating yet, but it is there and they will keep an eye on me by

> regular echo's and probably another angio if it deteriorates

further.

>

> I have also agreed to be in a study. Some of the docs think that a

> particular breathing test might detect PAH in fibrosis patients.

What

> they have done is taken this breathing test, which is very easy and

> involves breathing quickly and deeply in and out of a deflated

bladder

> for 20 seconds. You do this 3 times for them to get an accurate

> reading. They told me that according to the breathing test I was

at

> the top end of normal, borderline PAH. They then look at these

results

> up against the results of the angio, which as I said showed slight

PAH.

> They are hoping that if the results are consistant (and apparently

> they're looking good) they can use this to help reduce the need for

> angio's in patients with lung fibrosis. The machine that they use

> looks like a small computor monitor with a flat basketball attached

to a

> hose. This size means that it could be something that the docs

have and

> just test you along with your other pft's. It's considerably

quicker

> than an echo. They are currently in the first phase of the study,

> which means they need 30 people. If this is successful they can go

for

> funding to increase the amount of people in the trial.

>

> Also, the hospital I was at this week has specialists in lung

fibrosis.

> My doc, while lovely, is a cystic fibrosis specialist, not a

pulmonary

> fibrosis specialist. They are going to transfer me to there.

They

> think a different treatment might be more beneficial to me.

>

> I have a weeks worth of posts to catch up on now so I'll check

those out

> later

>

> Love Ze xx

>

[Guest guest]

Hi May, How are you doing? And the Bride and Groom? And the hunk??  LOL Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."

[Guest guest]

Hi Peggy,

I'm already on pred, but they think that something else may be better for me. They're going to get copies of all my notes from my current docs and have a read up. I'm hoping that I'm not shooting myself in the foot as I do really like my current chest physician, and there is something to be said for a good relationship with your doc.

Poor Lili has come down with chicken pox while I was away! Poor thing is covered in spots. She was dead pleased to see me, but combined with the misery of itching. They're beginning to dry up now, so hopefully she won't be itchy for too long.

Love Ze xx>> Z, I am so glad to hear from you. Sorry about the pain and additional > problems, glad about a new specialist. Really happy you kept your > knickers on LOL> I sure do hope the treatment isn't prednisone. lol you know me and > pred..> > How excited was Lili to see Mommy?> Keep us posted.> > > > > > Love and Prayers, Peggy> IPF 2004, Florida> > "Worry looks around,> Sorry looks back,> Faith looks up.">

[Guest guest]

Hi Peggy,

I'm already on pred, but they think that something else may be better for me. They're going to get copies of all my notes from my current docs and have a read up. I'm hoping that I'm not shooting myself in the foot as I do really like my current chest physician, and there is something to be said for a good relationship with your doc.

Poor Lili has come down with chicken pox while I was away! Poor thing is covered in spots. She was dead pleased to see me, but combined with the misery of itching. They're beginning to dry up now, so hopefully she won't be itchy for too long.

Love Ze xx>> Z, I am so glad to hear from you. Sorry about the pain and additional > problems, glad about a new specialist. Really happy you kept your > knickers on LOL> I sure do hope the treatment isn't prednisone. lol you know me and > pred..> > How excited was Lili to see Mommy?> Keep us posted.> > > > > > Love and Prayers, Peggy> IPF 2004, Florida> > "Worry looks around,> Sorry looks back,> Faith looks up.">

[Guest guest]

peggy,

andy is laughing as i have just read your msg to him. he said you

have very good taste. i am fine. all is well in my world.

spent the day in a park yesterday with an old workmate i hadn't

seen for ten yrs and her 2yr old son brodie. jane was a 17 yr old

student i had for 6wks in the summer and we got on very very well.

she tracked me down through friends reunited. it was lovely.

i came home and said to andy that it was awkward at the start and

maybe she hadn't enjoyed it but then i realised we had been in the

park for 4.5hrs and just slipped back into a easy way of discussing

everything. i said to her son as i left him in his car seat, it

was nice to meet you and he said 'you too'. lol.

the newlyweds are up north at an annual music festival called 'T in

the park'. it normally ends up raining and a mud-bath. rosanna has

never managed to go before as she usually works fri/sat evenings. i

have not seen them much. she is doing a 9-5 just now doing drama

courses for children over the summer vacation and before the theatre

season restarts so she is making the most of getting out at night.

i am feeling very much recovered from all the over exertion at the

wedding and looking forward to both my neices giving birth in sept

and nov. the board is very busy and i have given up reading

digests. i read from the web these days. i am so upset for brett

and hope that they are right that the mass will respond to chemo.

may uip 0606

glasgow, scotland

>

> Hi May, How are you doing? And the Bride and Groom? And the hunk??

LOL

>

>

> 

>

>

> Love and Prayers, Peggy

> IPF 2004, Florida

>

> " Worry looks around,

> Sorry looks back,

> Faith looks up. "

>

[Guest guest]

Zena,

I'm so glad you're home! I know it must be a relief. No PH would have been better but mild is not as bad as it could be and now they will monitor it closely.

Happy you're back with us and I'm sure Rob and Lili are too!!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Cooeee

Hello, I'm back I've only just got home and I'm still a little uncomfortable but at least I wasn't left in a room with a strange man and no knickers Tbh, I found it very painful which I was told is rare and considering I have quite a high pain threshold quite surprising.

The results are that I have very mild PAH, possibly too low to bother medicating yet, but it is there and they will keep an eye on me by regular echo's and probably another angio if it deteriorates further.

I have also agreed to be in a study. Some of the docs think that a particular breathing test might detect PAH in fibrosis patients. What they have done is taken this breathing test, which is very easy and involves breathing quickly and deeply in and out of a deflated bladder for 20 seconds. You do this 3 times for them to get an accurate reading. They told me that according to the breathing test I was at the top end of normal, borderline PAH. They then look at these results up against the results of the angio, which as I said showed slight PAH. They are hoping that if the results are consistant (and apparently they're looking good) they can use this to help reduce the need for angio's in patients with lung fibrosis. The machine that they use looks like a small computor monitor with a flat basketball attached to a hose. This

size means that it could be something that the docs have and just test you along with your other pft's. It's considerably quicker than an echo. They are currently in the first phase of the study, which means they need 30 people. If this is successful they can go for funding to increase the amount of people in the trial.

Also, the hospital I was at this week has specialists in lung fibrosis. My doc, while lovely, is a cystic fibrosis specialist, not a pulmonary fibrosis specialist. They are going to transfer me to there. They think a different treatment might be more beneficial to me.

I have a weeks worth of posts to catch up on now so I'll check those out later

Love Ze xx

[Guest guest]

Ze... I think I forgot to add my

Hear me talk!about you being home again. I know Rob and Lili are so glad to have you 'tucked in' again too.

Have a good Sunday...

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

Cooeee

Hello, I'm back I've only just got home and I'm still a little uncomfortable but at least I wasn't left in a room with a strange man and no knickers Tbh, I found it very painful which I was told is rare and considering I have quite a high pain threshold quite surprising.

The results are that I have very mild PAH, possibly too low to bother medicating yet, but it is there and they will keep an eye on me by regular echo's and probably another angio if it deteriorates further.

I have also agreed to be in a study. Some of the docs think that a particular breathing test might detect PAH in fibrosis patients. What they have done is taken this breathing test, which is very easy and involves breathing quickly and deeply in and out of a deflated bladder for 20 seconds. You do this 3 times for them to get an accurate reading. They told me that according to the breathing test I was at the top end of normal, borderline PAH. They then look at these results up against the results of the angio, which as I said showed slight PAH. They are hoping that if the results are consistant (and apparently they're looking good) they can use this to help reduce the need for angio's in patients with lung fibrosis. The machine that they use looks like a small computor monitor with a flat basketball attached to a hose. This size means that it could be something that the docs have and just test you along with your other pft's. It's considerably quicker than an echo. They are currently in the first phase of the study, which means they need 30 people. If this is successful they can go for funding to increase the amount of people in the trial.

Also, the hospital I was at this week has specialists in lung fibrosis. My doc, while lovely, is a cystic fibrosis specialist, not a pulmonary fibrosis specialist. They are going to transfer me to there. They think a different treatment might be more beneficial to me.

I have a weeks worth of posts to catch up on now so I'll check those out later

Love Ze xx