Re: Introduction...hello group...

[Guest guest]

Hello KatG & Matt, I really hate to welcome anyone new to our group but welcome. We are here for you and you are not alone. We have all felt exactly the panic, heartbreak you now have.

Life will not be what it was... but you can make it. Please remember you DO still have life. Be thankful for every day. The best advise I can give you is pray. God will give you peace with this monster we fight.

" I will tell you that I would talk to your Pulm. Dr about the prednisone. It makes you feel better and does a great job IF you have an infection. If not, it does NOTHING to help the ipf.. I know first hand. 70 lbs in 7 to 8 weeks. miserable ever since. And the side effects are HORRIBLE. so check that out for sure. I was diagnosed 9/04 with ipf, and am on oxygen now. If you have any questions or need to vent this is the place to do it. This group is amazing. I consider everyone of them family. I am crying with you, and am now praying for you. God Bless you both.

Peggy 09/04 ipf

My name is KAtG..and life changed for me and my husband forever on MAy

4th 2006...after and abnormal chest x-ray and CT scan our local MD

sent Matt onto a pulmo...our local MD has been treating MAtt for

asthma and maybe COPD for quite awhile...But MAtt breathlessness has

worsen over the past year and a half..and has always had a dry,

nonproductive cough but we thought it was from allergies....

I was afraid of lung cancer but our local MD told me that he did not

see a mass and thought it was COPD but to go onto the pulmo

anyway...Sometimes I wish we hadn't...

After PFTs and looking at the x-rays and cat scans...the pulmo came in

and told us that MAtt had pulmonary fibrosis-no treatment and

terminal...usually 3 to 5 years after diagnoses...He also stated that

lung transplants were expensive and there really was no quality of

life afterward...He told MAtt to go home and follow up in 6 months..

I felt like I had been stabbed in the heart....I have cried and cried

and had one panic attack after another...

We had a second opinion at another local pulmongist...He looked at the

CT scan..(not HRCT) and said it was pobbily fibrosis and showed us the

CT scans...He is nice but seems rather lost at what to do...He has

recommended a hospital in St. Louis -Jewish, that specializes in

ILDs...ofcorse we are 500 miles away but that is the closest there is...

He has explained VATS-but it sounds risky for someone with IFP...

Meanwhile he is treating MAtt with Immuran and predisone..hoping that

this might be HP....and that it will stop it...Also MAtt is suppose to

be boderline RA...so we are tring to get an appointment with a rhemy,

maybe the scarring is due to RA and if so maybe the treatment with

Embrel.....

Does life ever get back ontrack...do you ever feel happiness again???

I stay on the verge of tears most of the time...

MAtt is 51...KAtG

[Guest guest]

KatG and Matt. As Peggy said welcome, even though it's a hard place to be. The folks on this board are all wonderful, caring, supportive and spiritual.

My name is Sher. I'm 67. Confirmed May 5th, 2006 with PF. I too thought a cough was due to allergies and being short of breath due to overweight and out of shape. I was so stunned I couldn't speak to learn I had a "fatal" disease...no cure, no control. For me it's just one day at a time. Some days not so bad. Some days lousy. This is my fourth chronic condition to live with but somehow we do...live.

Come to the board often. Lots of information and lots of support. It is still taking me time to adjust. It's only been a bit over a month since the diagnosis. Pretty soon the crying will lessen.

God bless you! Sher ipf 5-06

Introduction...hello group...

My name is KAtG..and life changed for me and my husband forever on MAy4th 2006...after and abnormal chest x-ray and CT scan our local MDsent Matt onto a pulmo...our local MD has been treating MAtt forasthma and maybe COPD for quite awhile...But MAtt breathlessness hasworsen over the past year and a half..and has always had a dry,nonproductive cough but we thought it was from allergies....I was afraid of lung cancer but our local MD told me that he did notsee a mass and thought it was COPD but to go onto the pulmoanyway...Sometimes I wish we hadn't...After PFTs and looking at the x-rays and cat scans...the pulmo came inand told us that MAtt had pulmonary fibrosis-no treatment andterminal...usually 3 to 5 years after diagnoses...He also stated thatlung transplants were expensive and there really was no quality oflife afterward...He told MAtt to go home and follow up in 6 months..I felt like I had been stabbed in the heart....I have cried and criedand had one panic attack after another...We had a second opinion at another local pulmongist...He looked at theCT scan..(not HRCT) and said it was pobbily fibrosis and showed us theCT scans...He is nice but seems rather lost at what to do...He hasrecommended a hospital in St. Louis -Jewish, that specializes inILDs...ofcorse we are 500 miles away but that is the closest there is...He has explained VATS-but it sounds risky for someone with IFP...Meanwhile he is treating MAtt with Immuran and predisone..hoping thatthis might be HP....and that it will stop it...Also MAtt is suppose tobe boderline RA...so we are tring to get an appointment with a rhemy,maybe the scarring is due to RA and if so maybe the treatment withEmbrel.....Does life ever get back ontrack...do you ever feel happiness again???I stay on the verge of tears most of the time...MAtt is 51...KAtG

[Guest guest]

Hi KAtG and Matt, I am also relatively new to the support group

Diagnosed march 2006, on prednisone and NAC. Was on imuran, but had

a reaction when the dosage was increased. The prednisone has made a

diffence. After about 2 weeks i was less SOB, coughing less and less

tired. My activity level increased again. I am on 10mgs daily and

hope it enables me to remain stable.

My doc also told me to enroll in pulmonary rehab and to register with

the transplant team just in case i need one down the road. That is

very scary.

Welcome to the group.

>

> My name is KAtG..and life changed for me and my husband forever on

MAy

> 4th 2006...after and abnormal chest x-ray and CT scan our local MD

> sent Matt onto a pulmo...our local MD has been treating MAtt for

> asthma and maybe COPD for quite awhile...But MAtt breathlessness has

> worsen over the past year and a half..and has always had a dry,

> nonproductive cough but we thought it was from allergies....

> I was afraid of lung cancer but our local MD told me that he did not

> see a mass and thought it was COPD but to go onto the pulmo

> anyway...Sometimes I wish we hadn't...

> After PFTs and looking at the x-rays and cat scans...the pulmo came

in

> and told us that MAtt had pulmonary fibrosis-no treatment and

> terminal...usually 3 to 5 years after diagnoses...He also stated

that

> lung transplants were expensive and there really was no quality of

> life afterward...He told MAtt to go home and follow up in 6 months..

> I felt like I had been stabbed in the heart....I have cried and

cried

> and had one panic attack after another...

> We had a second opinion at another local pulmongist...He looked at

the

> CT scan..(not HRCT) and said it was pobbily fibrosis and showed us

the

> CT scans...He is nice but seems rather lost at what to do...He has

> recommended a hospital in St. Louis -Jewish, that specializes

in

> ILDs...ofcorse we are 500 miles away but that is the closest there

is...

> He has explained VATS-but it sounds risky for someone with IFP...

> Meanwhile he is treating MAtt with Immuran and predisone..hoping

that

> this might be HP....and that it will stop it...Also MAtt is suppose

to

> be boderline RA...so we are tring to get an appointment with a

rhemy,

> maybe the scarring is due to RA and if so maybe the treatment with

> Embrel.....

> Does life ever get back ontrack...do you ever feel happiness

again???

> I stay on the verge of tears most of the time...

> MAtt is 51...KAtG

>

[Guest guest]

I'd like to join the others to welcome you to our group....It is a

bittersweet thing to find us....you would certainly rather join a

group of people who just won the lottery...but, people here are very

supportive and know what you and your husband are going through. I

think we've all come here initially just like you are....going

through all the emotions.....I was so scared initially because I

didn't know what to expect....it helped me so much to hear how

others were doing. We write to the group when we are feeling

down....not feeling good....about to go to the doctor....and when we

have good days and go on trips....or even just to get out of the

house to buy something.

You both have to take some time to absorb all the information you've

received....time to process it.....I know you are scared.....life

was going along OK and then BAM.....it feels like you were hit by a

house. But, it doesn't stay that way....as far as what to

expect....that is up to you. You and Matt can take this information

and let fear paralize you or get so depressed that you don't care

about anything....OR, you can realise that we have no control over

things that happen, but we CAN control how we respond to them...if

you are a positive person, you will find some sunshine, even when

it's a tiny, tiny, very tiny sliver of light. No one wants to hear

that you may die in a few years, but there are people here who have

outlived that statistic. And, you already know that NO ONE knows

how long MATT will live. I would recommend that you find out all

the information you can ....find a doctor that your husband can talk

to.....and never give up hope. You and Matt can get a lot of help

from this group.....sometimes we talk about really sad things and

others we laugh at jokes. Here, the only difference is that you

don't have to explain every detail, because we already know how that

feels....some of us send great research papers....some have the gift

of prayer....but someone is always here to help lift you up when you

are low....or to offer advice when dealing with a doctor....or help

interpret test results.....the important thing is....we are here.

Hang in there and take care of each other.

[Guest guest]

KAtG (???),

My sympathies in hearing of MAtt's (???) diagnosis. I think he's not alone, but I'm not sure. Please excuse my lowly ignorance, but what are RA and HP? I'm not especially intelligent, and abbreviations baffle me. What is Embrel?

VATS is actual surgery into the lung, and as such is risky for anyone. It does, however, confirm an IPF diagnosis.

I know my life will never get back to the track it was on, but at least I have time to prepare for what they say is inevitable. I find the whole thing shocking, as I feel pretty damn good for my age (61), except for being out-of-breath all the time. I was pretty bitter at first, but after looking in the papers at the obits for awhile, I realize that there are lots of fellows in their 30-40's passing away, leaving young children. I always thought I'd be around into my 80-90's, but have to accept what comes my way. It's all a part of the life cycle. I don't especially like my prognosis, but guess I'll have to live with it (ha ha).

All my best,.........Arlen

[Guest guest]

Hi ....

Ms. Ellie (cow) was so pretty and gave such good milk...but nope don't

miss the added work...and know MAtt doesn't...

I guess what I miss or what scares me most is the change in our

lives...I guess we have become retired in a way...

He reads and watchs TV...still tends to some things outside...

I am on the computer alot more...and tending to him and the household

chores...we still got chickens so I tend them also...

Farm life is enjoyable but it is alot of work and when you can't get

enough air it sure makes it hard..

I got to increase my walking sure don't want to gain any weight..lol..

Three to five years sounds like a sentence for shop lifting or

something...If the pulmo would have said 10 to 15 years may have been

easier...But when I see MAtt struggling to breathe...hear him coughing

his head off...and see that look in his eye...It tears my heart

out...He hasn't broke down and cried yet...I do most everyday...

But we have gone through many hurdles in our lives and made it...but I

think this is the hardest...KAtG

>

> Hi KAtG and Matt There is a lot of information out there to

help you learn what is ahead of you. The 3 to 5 years is not written

in stone. I was diagnosed in 8/2000 with UIP secondary to muscle

disease Polymositis 12/98 Didn't go on o2 till 8/2004 So hang in

there and all of us will give you all the help we can. P UIP 8/00

> PS. Do you still miss the cow?

>

>

> ---------------------------------

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>

[Guest guest]

I not a very good speller so I abbriate alot..lol...

RA is rheumtoid arthritis....and HP is Hypersinsitivity

pneumonitis...I bet I murdered those spellings..lol...

I thin I am getting a better grip on things are right now I

am...KAtG

>

> KAtG (???),

> My sympathies in hearing of MAtt's (???) diagnosis. I think he's

not

> alone, but I'm not sure. Please excuse my lowly ignorance, but what

are RA and HP?

> I'm not especially intelligent, and abbreviations baffle me. What

is Embrel?

> VATS is actual surgery into the lung, and as such is risky for

anyone. It

> does, however, confirm an IPF diagnosis.

> I know my life will never get back to the track it was on, but

at least I

> have time to prepare for what they say is inevitable. I find the

whole thing

> shocking, as I feel pretty damn good for my age (61), except for being

> out-of-breath all the time. I was pretty bitter at first, but after

looking in the

> papers at the obits for awhile, I realize that there are lots of

fellows in

> their 30-40's passing away, leaving young children. I always thought

I'd be around

> into my 80-90's, but have to accept what comes my way. It's all a

part of the

> life cycle. I don't especially like my prognosis, but guess I'll

have to live

> with it (ha ha).

>

> All my best,.........Arlen

>

[Guest guest]

VATS can be a pain in the behind. I had that in October 2005 and a

collapsed lung for 3 days afterwards with a chest tube.

there can be happiness again once you are beyond the denial and

anger phases. i was diagnosed with PF and eosinophilic granuloma in

Oct. 2005. I am 30 years old. I just live each and everyday like

it's the last one i'll have. I love to laugh and make people laugh.

i was so very angry. i wanted to know why this happened to me and

how this happened to me if bad things are supposed to happen to bad

people then why in the hell was this being cast my way. i'm a good

person, a good mother, worked hard all my life for the things i have

and to make sure my family had everything they needed...why was this

happening to me.

i was taught all my life that God never puts more on a person that

they can bear but boy i sure do sometimes think he is really testing

me.

try explaining it to a 5 and a 9 year old. i couldn't find the words

to explain it in terms they would understand so they just know that

their mommy has sick lungs.

lots of us are connected on the yahoo messenger. you can add

ashli11_1999 to yours if you have it. that's me and i'm jaime from

houston texas.

i too am on prednisone. started at 60 mg a day 8 months ago and am

down to 30 mg a day now. i also take the actimmune injections 3

times a week, recently learned to give them to myself. i also have

to take prevacid for the stomach irritation caused by the

prednisone. i take zoloft, lasix and klor-con on a daily basis as

well. lately i've been on tons and tons of antibiotics and

expectorants for severe sinus, throat and ear infections.....the

joys of no immune system.

keeping you and your family in my thoughts.

jaime

>

> My name is KAtG..and life changed for me and my husband forever on

MAy

> 4th 2006...after and abnormal chest x-ray and CT scan our local MD

> sent Matt onto a pulmo...our local MD has been treating MAtt for

> asthma and maybe COPD for quite awhile...But MAtt breathlessness

has

> worsen over the past year and a half..and has always had a dry,

> nonproductive cough but we thought it was from allergies....

> I was afraid of lung cancer but our local MD told me that he did

not

> see a mass and thought it was COPD but to go onto the pulmo

> anyway...Sometimes I wish we hadn't...

> After PFTs and looking at the x-rays and cat scans...the pulmo

came in

> and told us that MAtt had pulmonary fibrosis-no treatment and

> terminal...usually 3 to 5 years after diagnoses...He also stated

that

> lung transplants were expensive and there really was no quality of

> life afterward...He told MAtt to go home and follow up in 6

months..

> I felt like I had been stabbed in the heart....I have cried and

cried

> and had one panic attack after another...

> We had a second opinion at another local pulmongist...He looked at

the

> CT scan..(not HRCT) and said it was pobbily fibrosis and showed us

the

> CT scans...He is nice but seems rather lost at what to do...He has

> recommended a hospital in St. Louis -Jewish, that

specializes in

> ILDs...ofcorse we are 500 miles away but that is the closest there

is...

> He has explained VATS-but it sounds risky for someone with IFP...

> Meanwhile he is treating MAtt with Immuran and predisone..hoping

that

> this might be HP....and that it will stop it...Also MAtt is

suppose to

> be boderline RA...so we are tring to get an appointment with a

rhemy,

> maybe the scarring is due to RA and if so maybe the treatment with

> Embrel.....

> Does life ever get back ontrack...do you ever feel happiness

again???

> I stay on the verge of tears most of the time...

> MAtt is 51...KAtG

>

[Guest guest]

Hey, Arlen: I know what you mean about being angry about not being able to grow as old as you once thought you would. I am 48 fixin' to turn 49 and at first I was angry at people in their sixities complaining about not being able to live much longer. I thought damn, I am never going to see sixty and there they are complaining. I have asked several people personally what it feels like to be in the sixities or seventies and no one has ever answered my question. I would love to know what it feels like, because I probably won't even see my mid fifties. But, like you, I am over it and have also been reading the obits. Lots of younger people than me are dying. I should be grateful for the time that I have had. Perhaps I have fulfilled the plan that God had for me and I will go on to a new future when I die. Hang in there Arlen, it has gotten better for me and I am sure it will for you. It is awful to

say, but I am almost looking forward to the end, because I suspect a new beginning. Barb in Ky ipf or pf / 11-05sarleno@... wrote: KAtG (???), My sympathies in hearing of MAtt's (???) diagnosis. I think he's not alone, but I'm not sure. Please excuse my lowly ignorance, but what are RA and HP? I'm not especially intelligent, and abbreviations baffle me. What is Embrel? VATS is actual surgery into the lung, and as such is risky for anyone. It does, however,

confirm an IPF diagnosis. I know my life will never get back to the track it was on, but at least I have time to prepare for what they say is inevitable. I find the whole thing shocking, as I feel pretty damn good for my age (61), except for being out-of-breath all the time. I was pretty bitter at first, but after looking in the papers at the obits for awhile, I realize that there are lots of fellows in their 30-40's passing away, leaving young children. I always thought I'd be around into my 80-90's, but have to accept what comes my way. It's all a part of the life cycle. I don't especially like my prognosis, but guess I'll have to live with it (ha ha). All my best,.........Arlen

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