New To Board

April 8, 2009

Hi All ...

I'm fairly new to the board ... Have been lurking and getting a feel for it.

You folks seem pretty darn NICE!!!

My name is Donna. Wife to , Sr for 41 years; Mother to , Jr(40yo),

Aimee(39yo) and Charlie(33yo); Grandmother to Silas(7yo), Abigail(4yo), and

Pippa & Jasper(2yo). THEY (all of the previous) are the joys in my life, for

sure!!

I was first diagnosed with Pulmonary Hypertension in Sept 2003. Was immediately

admitted to the hospital on what I thought would be a routine visit for

bronchitis. I had put off going to the doctor for about 8 or 9 months because

of insurance change and having to find a new doctor. When on one Saturday

afternoon when trying to change bedding on a twin size bed I became VERY SOB and

felt I was about to pass out. I had had SOB for a year or more but because it

came on fast but went away just as fast I more or less ignored it. That

Saturday it was different ... I didn't like the way my legs went limp and I had

to grab onto my desk til the feeling passed. I called a doctor 'from accepted

list' on Monday, got in to see him on Tuesday and as stated before was admitted

to hospital right then and there. The PCP doc came into my room that night and

told me it appeared I had PH and was bringing in Pulmo to my case. I called

home and asked my son to see what he could find on the internet about PH -- I

had never heard of it, but still had no idea it was so serious. My son brought

print-offs to me that night and it scared me -- saying death within 5 years of

diagnosis. OMG ... how could this be happening? Needless to say, I believe I

was in shock. LOL

The next couple of days in the hospital I was put thru a battery of tests:

echos, CTs, Blood Work, PFT, and others I forget now. Seems I spent little time

in my room.

After a week in the hospital I was released with oxygen 3lpn 24/7. That is

first time I cried --- just the sound of the concentrator. My mother and father

had both died on a ventilator and the sound was so 'the same' that I just sat

down on my bed and let the tears flow.

The doctors were reluctant to put a cause to my PH, but kept referring to my

taking of the diet drug Fen-Phen ....... which I took for maybe at most 3

months. I stopped when the doctor who was prescribing to me mentioned that I

had a heart murmur which I NEVER had before even tho I did have a heart attack

in 1989. Still, my cardio docs never mentioned a murmur, so I said WHOA to

myself and stopped the Fen-Phen.

During office visit with Pulmo, I was put on Prednisone. Being naive -- I had

not found forums at that time -- I was just going along with whatever the

doctors said. Heck, they just HAD to know more than me, cause I knew nothing.

Then Pulmo suggested a biopsy. His words being " Something else is going on with

your lungs. We can continue to treat with Pred and hope for the best or we can

do the biopsy and be sure. " Heck, I wanted 'to be sure' not a hit and a miss

treatment. I went into hospital to have biopsy 2 days before Thanksgiving in

2003. I only spent one night in hospital. My drainage tube came out on it's

own, so I was sent home on Thanksgiving Eve. That was the BEST and worst

Thanksgiving in opposite pole ways. I had some discomfort, called the surgeon

and went for office visit at their request. The surgeon is the one who gave me

the diagnosis of PF on that visit. Again, I was shocked. I do remember saying

to him " Well, at least it's not cancer " The look on his face was not good. I

said, " Would cancer be better? " He just sorta nodded his head -- not a full

blown yes, mind you. Again, the tears flowed.

In an attempt to shorten this novel. LOL ... let me say that the doctors (and I

even went to Vanderbilt for evaluation to be placed in a study there) ALL said

that the PH and PF were independent of one another. I to this day do not know

how they made that determination. Because I was unable to give them yes answers

to the questions they asked, it was determined I had IPF and PPH!!

I am not a candidate for transplant because of the PPH and my heart condition.

Soooo, that is where I stand. Presently taking a fistful of meds daily, one

being Tracleer for the PH, but I understand it is now being considered for the

treatment of PF also. I, on that basis, believe that drug is more than likely

what has hald me 'steady' up until recently.

I have an appt with my Pulmo on May 1st after a year and I feel as tho we might

see some progression. I know I don't feel so good the past 3-4 months, yet not

bad enough to schedule an earlier appointment. We shall see. Could be something

else entirely.

Due to the Pred, I now also have diabetes, neuropathy, cataracts. Seems it's

always something. Either I can't sleep at all or I sleep too much ---- Can't

eat at all or can't get enough to eat. I have to laugh at myself and the turns

my body takes or I would go nutz!

Thanks for hanging with me on this long diatribe .... I promise my future posts

will be shorter. ROFL

God Bless you all ....... you may be new to me but you are all in my prayers and

I hope you will add me to yours. It's a hideous disease. I hate it!!! (and

don't use the word hate much ... taught my kids it was the 'devil's word' and

they should say strongly dislike -- LOL ... so that shows you exactly how I

feel)

April 8, 2009

Donna, Boy have you come to the

right place...WELCOME!

Crying ,I understand and the cursing too!

There is a link to the PH and PF..many of us have both!

Isn't prednisone the worst/best drug around?

I've been on it for 3+ YEARS...STABLE since DX!!!

I have osteoporosis, GERD, cataracts, thanks to it...but my arthritis

doesn't hurt as much and

I now have curly hair..no joke..my hair went from poker straight to

curly in about 9 months!!!

I'm also O2 dependent..3 lpm 24/7...hate it but I deal with it...I get

out daily.

I'm married for 43+ years, have 3 grown kids and two gorgeous grand

daughters 3 1/2 and 14 months!

We sign off with our names, DX and date and state to help keep us aware

of who is who.

Many of us have added other stuff just for fun!

Again welcome to the "Air Family"

BTW...we're having a virtual Easter Day picnic in Maine this

week-end...please join us...bring

something fun...Jack is hosting in Acadia National Park.

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07 and Reynaud’s too!!

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Donna wrote:

Hi All ...

I'm fairly new to the board ... Have been lurking and getting a feel

for it. You folks seem pretty darn NICE!!!

My name is Donna. Wife to , Sr for 41 years; Mother to ,

Jr(40yo), Aimee(39yo) and Charlie(33yo); Grandmother to

Silas(7yo), Abigail(4yo), and Pippa & Jasper(2yo). THEY (all

of the previous) are the joys in my life, for sure!!

I was first diagnosed with Pulmonary Hypertension in Sept 2003. Was

immediately admitted to the hospital on what I thought would be a

routine visit for bronchitis. I had put off going to the doctor for

about 8 or 9 months because of insurance change and having to find a

new doctor. When on one Saturday afternoon when trying to change

bedding on a twin size bed I became VERY SOB and felt I was about to

pass out. I had had SOB for a year or more but because it came on fast

but went away just as fast I more or less ignored it. That Saturday it

was different ... I didn't like the way my legs went limp and I had to

grab onto my desk til the feeling passed. I called a doctor 'from

accepted list' on Monday, got in to see him on Tuesday and as stated

before was admitted to hospital right then and there. The PCP doc came

into my room that night and told me it appeared I had PH and was

bringing in Pulmo to my case. I called home and asked my son to see

what he could find on the internet about PH -- I had never heard of it,

but still had no idea it was so serious. My son brought print-offs to

me that night and it scared me -- saying death within 5 years of

diagnosis. OMG ... how could this be happening? Needless to say, I

believe I was in shock. LOL

The next couple of days in the hospital I was put thru a battery of

tests: echos, CTs, Blood Work, PFT, and others I forget now. Seems I

spent little time in my room.

After a week in the hospital I was released with oxygen 3lpn 24/7. That

is first time I cried --- just the sound of the concentrator. My mother

and father had both died on a ventilator and the sound was so 'the

same' that I just sat down on my bed and let the tears flow.

The doctors were reluctant to put a cause to my PH, but kept referring

to my taking of the diet drug Fen-Phen ....... which I took for maybe

at most 3 months. I stopped when the doctor who was prescribing to me

mentioned that I had a heart murmur which I NEVER had before even tho I

did have a heart attack in 1989. Still, my cardio docs never mentioned

a murmur, so I said WHOA to myself and stopped the Fen-Phen.

During office visit with Pulmo, I was put on Prednisone. Being naive --

I had not found forums at that time -- I was just going along with

whatever the doctors said. Heck, they just HAD to know more than me,

cause I knew nothing. Then Pulmo suggested a biopsy. His words being

"Something else is going on with your lungs. We can continue to treat

with Pred and hope for the best or we can do the biopsy and be sure."

Heck, I wanted 'to be sure' not a hit and a miss treatment. I went into

hospital to have biopsy 2 days before Thanksgiving in 2003. I only

spent one night in hospital. My drainage tube came out on it's own, so

I was sent home on Thanksgiving Eve. That was the BEST and worst

Thanksgiving in opposite pole ways. I had some discomfort, called the

surgeon and went for office visit at their request. The surgeon is the

one who gave me the diagnosis of PF on that visit. Again, I was

shocked. I do remember saying to him "Well, at least it's not cancer"

The look on his face was not good. I said, "Would cancer be better?" He

just sorta nodded his head -- not a full blown yes, mind you. Again,

the tears flowed.

In an attempt to shorten this novel. LOL ... let me say that the

doctors (and I even went to Vanderbilt for evaluation to be placed in a

study there) ALL said that the PH and PF were independent of one

another. I to this day do not know how they made that determination.

Because I was unable to give them yes answers to the questions they

asked, it was determined I had IPF and PPH!!

I am not a candidate for transplant because of the PPH and my heart

condition. Soooo, that is where I stand. Presently taking a fistful of

meds daily, one being Tracleer for the PH, but I understand it is now

being considered for the treatment of PF also. I, on that basis,

believe that drug is more than likely what has hald me 'steady' up

until recently.

I have an appt with my Pulmo on May 1st after a year and I feel as tho

we might see some progression. I know I don't feel so good the past 3-4

months, yet not bad enough to schedule an earlier appointment. We shall

see. Could be something else entirely.

Due to the Pred, I now also have diabetes, neuropathy, cataracts. Seems

it's always something. Either I can't sleep at all or I sleep too much

---- Can't eat at all or can't get enough to eat. I have to laugh at

myself and the turns my body takes or I would go nutz!

Thanks for hanging with me on this long diatribe .... I promise my

future posts will be shorter. ROFL

God Bless you all ....... you may be new to me but you are all in my

prayers and I hope you will add me to yours. It's a hideous disease. I

hate it!!! (and don't use the word hate much ... taught my kids it was

the 'devil's word' and they should say strongly dislike -- LOL ... so

that shows you exactly how I feel)

April 8, 2009