Re: new doc; new meds; new thrills!

[Guest guest]

Well, so glad you found a pulmonologist like that one. Yes, maybe the

street value of Revatio/Viagra is their concern, but in that case

they'd never prescribe any pain killer or psychiatric med. i've

flushed thousands and thousands of dollars of left over meds, at

street value, down the toilet. But otherwise it makes no sense. I,

personally, just wish it didn't have the alternate name of Revatio so

I could at some point in my life go to the pharmacist and see the

tech's face as here I am an old man on oxygen picking up my monthly

supply of 90 Viagra. Now for a woman that could be even stranger.

Well, back on subject, wish the reports were better for you, but just

to have someone looking and discussing with you and being honest,

understanding, and caring has to be a huge relief. Knowledge, even of

bad, empowers us I believe. And, it may save a life. For instance

right now you know something that could be life saving if you had a

sudden issue and ended up in ER. Now you could accurately tell them

the extent of your PH. You wish it was better but telling them in a

critical time that I have it but its mild could be horrible.

>

> 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, Bruce. You're right. Knowledge does empower us.

Tina

IPF 04/07 PH 11/07 Ohio

> >

> > 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]

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]

Oh tell me about it. My daughter is 5 and my heart just sinks when she starts coughing and snuffling (like this morning) and the thing is that if she's snuffling today, she was probably contagious yesterday! I don't really know how to avoid it without living in a bubble!

Love Ze xx> > >> > > 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> > >> >>