Re: new doc; new meds; new thrills!

[Guest guest]

Gosh I am so glad you found some one you like, he seems to be really

nice and professional and genuinely caring that is so hard to find

these days or I dont know where to look!

I hope getting your xrays and etc go well!

Sandie

>

> I went to see my new " Ohio " pulmonologist today. He's in Sandusky,

> which is only about one hour from here at my mom's house. I

really,

> really liked him. He was very patient with me and all my questions

> and he seemed very thorough. He looked at my CT scan from

Cleveland

> Clinic on Jan 9th with me and pointed out things that I didn't

> really know about. I told him that my prescription company had yet

> to fill the prescrip for Viagra to treat PH, which didn't surprise

> him. So, he prescribed Tracleer instead. He said it costs a lot

> more ($3000 a month!), but the insurance companies don't question

it

> as much for treatment. Doesn't that just beat all! They would

> rather pay more money than give me the Viagra. I guess they think

> there's some " street " value and I might sell it? Who knows! Crazy

> idiots. Anyway, he also told me my PH was more than " slight " , it

is

> Class IV. More serious than I thought. I showed him all of my

> records from the transplant evaluation process and he took copies

of

> everything. He even read some of the stuff while I was there. I

> asked the obvious questions...prognosis...duration...end of life

> issues....progression, etc. He has asked to see as many of my

> previous X-rays as I can track down and my very first PFT report

> (which was conducted in April, 2006. So, I have to re-request

these

> records for him and he said by the time we meet again in three

> months, he will have a better comprension of how much and how fast

> IPF is debilitating me. If my recollection of the 2006 PFT report

> is accurate, it says " moderate restriction " and now I have been

> labeled as " severe " , so I guess that gives some idea of the

spread.

> I was impressed with him and I think I will keep him! I didn't

> really learn anything new, just one more voice to reassure me that

> everything I already know, is everything there is to know.

>

> God Bless,

>

> Tina

> IPF 04/07 PH 11/07 Ohio

>

[Guest guest]

How crazy is the prices they put on med. I know a guy that pays $9. a pill.  maybe we're going at this wrong,, Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up.

[Guest guest]

Tina... I'm so glad to read that you like the new Dr.! Keeping him sounds like a good move. However, I'm saddened to read your condition is now severe. I'm at a loss of words. So many of us to encourage ...so many times to say the "same old thing" . I admit, there are sad days here on the board and I so want to be encouraging but what is left to say? Damnit! Will that do?

I guess I've been lucky, it's only since my Dx in 3-06 that I've noticed a down-turn in the quality of my care. Actually I've been surprised, especially this last doc; his notes and comments and lack of information being passed on to me.

But back to you...I know how you feel about hospitals too.

Again, I used to feel a hospital was 'safety, security, help and a life-saving place to go'. Now I dread going. I watch everything and ask questions of everyone.

Do continue to take good care of you.

What a wonderful trip to look forward to. I wish I were going!

Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there!

new doc; new meds; new thrills!

I went to see my new "Ohio" pulmonologist today. He's in Sandusky, which is only about one hour from here at my mom's house. I really, really liked him. He was very patient with me and all my questions and he seemed very thorough. He looked at my CT scan from Cleveland Clinic on Jan 9th with me and pointed out things that I didn't really know about. I told him that my prescription company had yet to fill the prescrip for Viagra to treat PH, which didn't surprise him. So, he prescribed Tracleer instead. He said it costs a lot more ($3000 a month!), but the insurance companies don't question it as much for treatment. Doesn't that just beat all! They would rather pay more money than give me the Viagra. I guess they think there's some "street" value and I might sell it? Who knows! Crazy idiots. Anyway, he also told me my PH was more than "slight", it is Class IV. More serious than I thought. I showed him all of my records from the transplant evaluation process and he took copies of everything. He even read some of the stuff while I was there. I asked the obvious questions...prognosis...duration...end of life issues....progression, etc. He has asked to see as many of my previous X-rays as I can track down and my very first PFT report (which was conducted in April, 2006. So, I have to re-request these records for him and he said by the time we meet again in three months, he will have a better comprension of how much and how fast IPF is debilitating me. If my recollection of the 2006 PFT report is accurate, it says "moderate restriction" and now I have been labeled as "severe", so I guess that gives some idea of the spread. I was impressed with him and I think I will keep him! I didn't really learn anything new, just one more voice to reassure me that everything I already know, is everything there is to know. God Bless,TinaIPF 04/07 PH 11/07 Ohio

[Guest guest]

Thanks Peggy...Yes, put me once again in your sweet prayer box.

Guess it's just my turn. I haven't had real good luck with a pulmonologist since Dx.

I'm pining a lot on OHSU for clarification.

This doc says he doesn't think I have IPF but the reports state it's in all five lobes. I'm really confused. I wasn't before. I took the Dx on the chin and moved forward. Now I don't know where I am.

God does though.

Thanks for your prayers.

Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there!

Re: new doc; new meds; new thrills!

Sweet Ladybug, I am just astounded at your PAST doc. It will be interesting to see what the next one says. You would think in this

country we could expect better than we're getting for sure. I must say I am very happy with my doc and care.

When I was Dx the report said severe emphysema and chronic fibrosis throughout both lungs. That was Aug 9th 2004. I am just recently aware of what it means not to have enough air for your body to work at all.

I HATE THIS DISEASE.. You know I am praying for you..

Love and Prayers, Peggy

ipf 6/04

Worry looks around.

Sorry looks back,

Faith looks up.

[Guest guest]

Thanks, Sher! Dammit! was just the words I needed for a laugh

today!

God Bless,

Tina

IPF 04/07 PH 11/07 Ohio

>

> Tina... I'm so glad to read that you like the new Dr.! Keeping

him sounds like a good move. However, I'm saddened to read your

condition is now severe. I'm at a loss of words. So many of us to

encourage ...so many times to say the " same old thing " . I admit,

there are sad days here on the board and I so want to be encouraging

but what is left to say? Damnit! Will that do?

> I guess I've been lucky, it's only since my Dx in 3-06 that I've

noticed a down-turn in the quality of my care. Actually I've been

surprised, especially this last doc; his notes and comments and lack

of information being passed on to me.

> But back to you...I know how you feel about hospitals too.

> Again, I used to feel a hospital was 'safety, security, help and a

life-saving place to go'. Now I dread going. I watch everything and

ask questions of everyone.

> Do continue to take good care of you.

> What a wonderful trip to look forward to. I wish I were going!

> Mama-Sher, 69; IPF, 3-06, OR.

> Don't fret about tomorrow, God is already there!

> new doc; new meds; new thrills!

>

>

> I went to see my new " Ohio " pulmonologist today. He's in

Sandusky,

> which is only about one hour from here at my mom's house. I

really,

> really liked him. He was very patient with me and all my

questions

> and he seemed very thorough. He looked at my CT scan from

Cleveland

> Clinic on Jan 9th with me and pointed out things that I didn't

> really know about. I told him that my prescription company had

yet

> to fill the prescrip for Viagra to treat PH, which didn't

surprise

> him. So, he prescribed Tracleer instead. He said it costs a lot

> more ($3000 a month!), but the insurance companies don't

question it

> as much for treatment. Doesn't that just beat all! They would

> rather pay more money than give me the Viagra. I guess they

think

> there's some " street " value and I might sell it? Who knows!

Crazy

> idiots. Anyway, he also told me my PH was more than " slight " , it

is

> Class IV. More serious than I thought. I showed him all of my

> records from the transplant evaluation process and he took

copies of

> everything. He even read some of the stuff while I was there. I

> asked the obvious questions...prognosis...duration...end of life

> issues....progression, etc. He has asked to see as many of my

> previous X-rays as I can track down and my very first PFT report

> (which was conducted in April, 2006. So, I have to re-request

these

> records for him and he said by the time we meet again in three

> months, he will have a better comprension of how much and how

fast

> IPF is debilitating me. If my recollection of the 2006 PFT

report

> is accurate, it says " moderate restriction " and now I have been

> labeled as " severe " , so I guess that gives some idea of the

spread.

> I was impressed with him and I think I will keep him! I didn't

> really learn anything new, just one more voice to reassure me

that

> everything I already know, is everything there is to know.

>

> God Bless,

>

> Tina

> IPF 04/07 PH 11/07 Ohio

>

[Guest guest]

Thanks, Zena - I will. Getting a cold even scares me, especially

with my son being in kindergarten and bringing home all those

germs! Poor little guy has to go through a NASA washdown with hand

sanitizer when he comes in the door! But, he still loves me.

God Bless,

Tina

IPF 04/07 PH 11/07 Ohio

> >

> > Tina... I'm so glad to read that you like the new Dr.! Keeping

him

> sounds like a good move. However, I'm saddened to read your

condition is

> now severe. I'm at a loss of words. So many of us to

encourage ...so

> many times to say the " same old thing " . I admit, there are sad

days

> here on the board and I so want to be encouraging but what is left

to

> say? Damnit! Will that do?

> > I guess I've been lucky, it's only since my Dx in 3-06 that I've

> noticed a down-turn in the quality of my care. Actually I've been

> surprised, especially this last doc; his notes and comments and

lack of

> information being passed on to me.

> > But back to you...I know how you feel about hospitals too.

> > Again, I used to feel a hospital was 'safety, security, help and

a

> life-saving place to go'. Now I dread going. I watch everything

and ask

> questions of everyone.

> > Do continue to take good care of you.

> > What a wonderful trip to look forward to. I wish I were going!

> > Mama-Sher, 69; IPF, 3-06, OR.

> > Don't fret about tomorrow, God is already there!

> > new doc; new meds; new thrills!

> >

> >

> > I went to see my new " Ohio " pulmonologist today. He's in

Sandusky,

> > which is only about one hour from here at my mom's house. I

really,

> > really liked him. He was very patient with me and all my

questions

> > and he seemed very thorough. He looked at my CT scan from

Cleveland

> > Clinic on Jan 9th with me and pointed out things that I didn't

> > really know about. I told him that my prescription company had

yet

> > to fill the prescrip for Viagra to treat PH, which didn't

surprise

> > him. So, he prescribed Tracleer instead. He said it costs a lot

> > more ($3000 a month!), but the insurance companies don't

question it

> > as much for treatment. Doesn't that just beat all! They would

> > rather pay more money than give me the Viagra. I guess they think

> > there's some " street " value and I might sell it? Who knows! Crazy

> > idiots. Anyway, he also told me my PH was more than " slight " , it

is

> > Class IV. More serious than I thought. I showed him all of my

> > records from the transplant evaluation process and he took

copies of

> > everything. He even read some of the stuff while I was there. I

> > asked the obvious questions...prognosis...duration...end of life

> > issues....progression, etc. He has asked to see as many of my

> > previous X-rays as I can track down and my very first PFT report

> > (which was conducted in April, 2006. So, I have to re-request

these

> > records for him and he said by the time we meet again in three

> > months, he will have a better comprension of how much and how

fast

> > IPF is debilitating me. If my recollection of the 2006 PFT report

> > is accurate, it says " moderate restriction " and now I have been

> > labeled as " severe " , so I guess that gives some idea of the

spread.

> > I was impressed with him and I think I will keep him! I didn't

> > really learn anything new, just one more voice to reassure me

that

> > everything I already know, is everything there is to know.

> >

> > God Bless,

> >

> > Tina

> > IPF 04/07 PH 11/07 Ohio

> >

>

[Guest guest]

Thank you, Peggy. Don't you love the variety of words we hear?

Chronic, severe, etc...they could just say, " Worst dang case of it I

ever saw! " We get the meaning, don't we? None of my tests were

needed to tell me what I already knew. I can't breathe. I'm not

getting enough 02. Those were my complaints then, and those are

still my complaints without supplemental 02. Having the 02 has

really helped alot, but my sats are so ever changing I am up and

down, and up and down, just adjusting the liters. The brightest

part of my day is knowing why I feel the way I feel, and that I can

make the most of it. This disease doesn't have total control yet.

I just won't let it.

God Bless,

Tina

IPF 04/07 PH 11/07 Ohio

>

> Sweet Ladybug, I am just astounded at your PAST doc. It will be

> interesting to see what the next one says. You would think in this

> country we could expect better than we're getting for sure. I

must

> say I am very happy with my doc and care.

>

> When I was Dx the report said severe emphysema and chronic

fibrosis

> throughout both lungs. That was Aug 9th 2004. I am just recently

> aware of what it means not to have enough air for your body to

work

> at all.

>

> I HATE THIS DISEASE.. You know I am praying for you..

>

>

> Love and Prayers, Peggy

> ipf 6/04

>

> Worry looks around.

> Sorry looks back,

> Faith looks up.

>

[Guest guest]

Funny story. The Viagra that was prescribed for me cost about $1300

for a 90 days supply. The new px of Tracleer cost $3000 a month.

Lol. My insurance company called me today to make sure I knew what

the co-pay would be. I listened carefully, dreading to hear what

they were going to say....it's $25! And, then the girl says, " Is

that going to be a problem for you? " I inwardly chuckled and

said, " No, I think I can handle that. "

God Bless,

Tina

IPF 04/07 PH 11/07 Ohio

>

> Peggy...I picked up Rx a few days ago. One at $5 co-pay, the

other was $80!!! no-pay...name brand. Geeze!

> Mama-Sher, 69; IPF, 3-06, OR.

> Don't fret about tomorrow, God is already there!

> Re: new doc; new meds; new thrills!

>

>

> How crazy is the prices they put on med. I know a guy that pays

$9. a pill. maybe we're going at this wrong,,

>

>

>

>

> Love and Prayers, Peggy

> ipf 6/04

>

>

> Worry looks around.

> Sorry looks back,

> Faith looks up.

>

[Guest guest]

Tina... we've seen your 'good attitude' ever since you joined this board. I remember I used to be like you...just couldn't get me down. Now, just blow hard! lol

Hi to Kaleb

Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there!

Re: new doc; new meds; new thrills!

Thank you, Peggy. Don't you love the variety of words we hear? Chronic, severe, etc...they could just say, "Worst dang case of it I ever saw!" We get the meaning, don't we? None of my tests were needed to tell me what I already knew. I can't breathe. I'm not getting enough 02. Those were my complaints then, and those are still my complaints without supplemental 02. Having the 02 has really helped alot, but my sats are so ever changing I am up and down, and up and down, just adjusting the liters. The brightest part of my day is knowing why I feel the way I feel, and that I can make the most of it. This disease doesn't have total control yet. I just won't let it.God Bless,TinaIPF 04/07 PH 11/07 Ohio>> Sweet Ladybug, I am just astounded at your PAST doc. It will be > interesting to see what the next one says. You would think in this> country we could expect better than we're getting for sure. I must > say I am very happy with my doc and care.> > When I was Dx the report said severe emphysema and chronic fibrosis > throughout both lungs. That was Aug 9th 2004. I am just recently > aware of what it means not to have enough air for your body to work > at all.> > I HATE THIS DISEASE.. You know I am praying for you..> > > Love and Prayers, Peggy> ipf 6/04> > Worry looks around.> Sorry looks back,> Faith looks up.>