Re: Sildenafil Study Visit

[Guest guest]

Jane

So happy that you're doing so well, real or placebo. You initially had

some very mild side effects didn't you that would make one believe it

was the real thing? Or am I mistaken? Of course one can have side

effects even from placebo effect. Either way now you know you're headed

to the real thing and your six minute walk in great.

>

>

> HI Everyone! Today was week 12 in the Step Trial. I had to have an ABG

> and some PFTs but not all of them. (didn't have to pant!), the other

> usual blood work (each arm had a stick). My PFTs were basically the

> same as before. My DL Adj improved to 9.0. (Previous scores: 7.9 &

> 8.9) I completed the 6 MW on room air, 21%. I walked 280 meters in 6

> minutes on room air with a 3 minute recovery of 95%, all on room air.

> Previously I completed the 6 MW and walked 258 meters on 4/25/8; 140

> meters on 5/9/8 where I did not finish the walk because my sat dropped

> to 79% (it was a bad allergy day) and I finished the walk on 6/20/8

> walking 270 meters. I am now officially on the drug. I have had two

> doses so far and I still feel the same. Won't ever know if I have been

> taking the drug or placebo.

>

> My doctor tells me my numbers are going up. I have to go back next

> Friday for another brief visit, no PFTs. The nurse is trying to get

> approval from Duke to raise the reinbursement. I hope it comes through

> next Friday.

>

> Hope everyone has a good weekend.

>

> Toodles!

>

> Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>

[Guest guest]

Jane I am so happy for you. Shoot next thing we know you'll be running around the block.. How great to have improvement.. YEAH JANE.. Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."

[Guest guest]

Hi Jane,

I'm pleased the trial seems to be working, but I'm confused, why won't they tell you if you were on the drug or the placebo. I was envolved in a double blind study, but I was told afterwards that I was on the placebo. I assume that as they have put you on the drug then it proved useful overall. Good luck with it all

Love Ze xx>> > HI Everyone! Today was week 12 inou the Step Trial. I had to have an ABG> and some PFTs but not all of them. (didn't have to pant!), the other> usual blood work (each arm had a stick). My PFTs were basically the> same as before. My DL Adj improved to 9.0. (Previous scores: 7.9 & > 8.9) I completed the 6 MW on room air, 21%. I walked 280 meters in 6> minutes on room air with a 3 minute recovery of 95%, all on room air. > Previously I completed the 6 MW and walked 258 meters on 4/25/8; 140> meters on 5/9/8 where I did not finish the walk because my sat dropped> to 79% (it was a bad allergy day) and I finished the walk on 6/20/8> walking 270 meters. I am now officially on the drug. I have had two> doses so far and I still feel the same. Won't ever know if I have been> taking the drug or placebo.> > My doctor tells me my numbers are going up. I have to go back next> Friday for another brief visit, no PFTs. The nurse is trying to get> approval from Duke to raise the reinbursement. I hope it comes through> next Friday.> > Hope everyone has a good weekend.> > Toodles!> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>

[Guest guest]

Jane... I have to tell you how glad I am that your numbers are going up!

You deserve the best.

Love ya.

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

Sildenafil Study Visit

HI Everyone! Today was week 12 in the Step Trial. I had to have an ABG and some PFTs but not all of them. (didn't have to pant!), the other usual blood work (each arm had a stick). My PFTs were basically the same as before. My DL Adj improved to 9.0. (Previous scores: 7.9 & 8.9) I completed the 6 MW on room air, 21%. I walked 280 meters in 6 minutes on room air with a 3 minute recovery of 95%, all on room air. Previously I completed the 6 MW and walked 258 meters on 4/25/8; 140 meters on 5/9/8 where I did not finish the walk because my sat dropped to 79% (it was a bad allergy day) and I finished the walk on 6/20/8 walking 270 meters. I am now officially on the drug. I have had two doses so far and I still feel the same. Won't ever know if I have been taking the drug or placebo.

My doctor tells me my numbers are going up. I have to go back next Friday for another brief visit, no PFTs. The nurse is trying to get approval from Duke to raise the reinbursement. I hope it comes through next Friday.

Hope everyone has a good weekend.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

Jane,

I am so happy for you and your family. I sincerely pray that this drug buys more time for you. You are such a good person and this earth needs more good people. My prayers go with you.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> > HI Everyone! Today was week 12 in the Step Trial. I had to have an ABG> and some PFTs but not all of them. (didn't have to pant!), the other> usual blood work (each arm had a stick). My PFTs were basically the> same as before. My DL Adj improved to 9.0. (Previous scores: 7.9 & > 8.9) I completed the 6 MW on room air, 21%. I walked 280 meters in 6> minutes on room air with a 3 minute recovery of 95%, all on room air. > Previously I completed the 6 MW and walked 258 meters on 4/25/8; 140> meters on 5/9/8 where I did not finish the walk because my sat dropped> to 79% (it was a bad allergy day) and I finished the walk on 6/20/8> walking 270 meters. I am now officially on the drug. I have had two> doses so far and I still feel the same. Won't ever know if I have been> taking the drug or placebo.> > My doctor tells me my numbers are going up. I have to go back next> Friday for another brief visit, no PFTs. The nurse is trying to get> approval from Duke to raise the reinbursement. I hope it comes through> next Friday.> > Hope everyone has a good weekend.> > Toodles!> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>

[Guest guest]

Mama-Sher: Happy Birthday to You!!!!! And many more!!!!

Love & Toodles

Jane UIP/IPF 12/1998 Dalton. Georgia aka pianolady_musicgirl

>> Jane... I have to tell you how glad I am that your numbers are going up!> You deserve the best.> Love ya.> > MamaSher, age 69. IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Sildenafil Study Visit> > > > HI Everyone! Today was week 12 in the Step Trial. I had to have an ABG and some PFTs but not all of them. (didn't have to pant!), the other usual blood work (each arm had a stick). My PFTs were basically the same as before. My DL Adj improved to 9.0. (Previous scores: 7.9 & 8.9) I completed the 6 MW on room air, 21%. I walked 280 meters in 6 minutes on room air with a 3 minute recovery of 95%, all on room air. Previously I completed the 6 MW and walked 258 meters on 4/25/8; 140 meters on 5/9/8 where I did not finish the walk because my sat dropped to 79% (it was a bad allergy day) and I finished the walk on 6/20/8 walking 270 meters. I am now officially on the drug. I have had two doses so far and I still feel the same. Won't ever know if I have been taking the drug or placebo. > > My doctor tells me my numbers are going up. I have to go back next Friday for another brief visit, no PFTs. The nurse is trying to get approval from Duke to raise the reinbursement. I hope it comes through next Friday.> > Hope everyone has a good weekend. > > Toodles!> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>

[Guest guest]

Hi Everyone, could someone explain what they mean by panting during pfts

sharon p ph 2008

Subject: Re: Sildenafil Study VisitTo: Breathe-Support Date: Saturday, August 2, 2008, 1:01 PM

Mama-Sher: Happy Birthday to You!!!!! And many more!!!!

Love & Toodles

Jane UIP/IPF 12/1998 Dalton. Georgia aka pianolady_musicgirl

>> Jane... I have to tell you how glad I am that your numbers are going up!> You deserve the best.> Love ya.> > MamaSher, age 69. IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Sildenafil Study Visit> > > > HI Everyone! Today was week 12 in the Step Trial. I had to have an ABG and some PFTs but not all of them. (didn't have to pant!), the other usual blood work (each arm had a stick). My PFTs were basically the same as before. My DL Adj improved to 9.0. (Previous scores: 7.9 & 8.9) I completed the 6 MW on room air, 21%. I walked 280 meters in 6 minutes on

room air with a 3 minute recovery of 95%, all on room air. Previously I completed the 6 MW and walked 258 meters on 4/25/8; 140 meters on 5/9/8 where I did not finish the walk because my sat dropped to 79% (it was a bad allergy day) and I finished the walk on 6/20/8 walking 270 meters. I am now officially on the drug. I have had two doses so far and I still feel the same. Won't ever know if I have been taking the drug or placebo. > > My doctor tells me my numbers are going up. I have to go back next Friday for another brief visit, no PFTs. The nurse is trying to get approval from Duke to raise the reinbursement. I hope it comes through next Friday.> > Hope everyone has a good weekend. > > Toodles!> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>

[Guest guest]

Thank you, Bruce, (and Mama-Sher). I have been working very hard at making sure I go to exercise 3 times a week or 12 times in a month. I achieved 12 times per month in April, May, & June. Because of my hectic schedule, I only made 11 times in July, so I broke my record. I have to go back to Emory next Friday for another study visit. There will be no PFTs!!! Only to see the doctor & nurse.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

P.S. Bruce, do you remember when I had trouble walking back to the hotel from the Riverwalk when we were in San ? (On a Friday night after we left the barbecue restaurant)

> >> >> > HI Everyone! Today was week 12 in the Step Trial. I had to have an ABG> > and some PFTs but not all of them. (didn't have to pant!), the other> > usual blood work (each arm had a stick). My PFTs were basically the> > same as before. My DL Adj improved to 9.0. (Previous scores: 7.9 & > > 8.9) I completed the 6 MW on room air, 21%. I walked 280 meters in 6> > minutes on room air with a 3 minute recovery of 95%, all on room air.> > Previously I completed the 6 MW and walked 258 meters on 4/25/8; 140> > meters on 5/9/8 where I did not finish the walk because my sat dropped> > to 79% (it was a bad allergy day) and I finished the walk on 6/20/8> > walking 270 meters. I am now officially on the drug. I have had two> > doses so far and I still feel the same. Won't ever know if I have been> > taking the drug or placebo.> >> > My doctor tells me my numbers are going up. I have to go back next> > Friday for another brief visit, no PFTs. The nurse is trying to get> > approval from Duke to raise the reinbursement. I hope it comes through> > next Friday.> >> > Hope everyone has a good weekend.> >> > Toodles!> >> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >>

[Guest guest]

this is when you have to pant like a dog does, little short breaths not to strong yet not to weak, then its big deep breath in and blow out really hard for as long as you can. george IPF 06-08 KS

Sildenafil Study Visit> > > > HI Everyone! Today was week 12 in the Step Trial. I had to have an ABG and some PFTs but not all of them. (didn't have to pant!), the other usual blood work (each arm had a stick). My PFTs were basically the same as before. My DL Adj improved to 9.0. (Previous scores: 7.9 & 8.9) I completed the 6 MW on room air, 21%. I walked 280 meters in 6 minutes on

room air with a 3 minute recovery of 95%, all on room air. Previously I completed the 6 MW and walked 258 meters on 4/25/8; 140 meters on 5/9/8 where I did not finish the walk because my sat dropped to 79% (it was a bad allergy day) and I finished the walk on 6/20/8 walking 270 meters. I am now officially on the drug. I have had two doses so far and I still feel the same. Won't ever know if I have been taking the drug or placebo. > > My doctor tells me my numbers are going up. I have to go back next Friday for another brief visit, no PFTs. The nurse is trying to get approval from Duke to raise the reinbursement. I hope it comes through next Friday.> > Hope everyone has a good weekend. > > Toodles!> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>

[Guest guest]

thanks georgesharon p ph i think 2008

From: Jane <jjarrettoptilink (DOT) us>Subject: Re: Sildenafil Study VisitTo: Breathe-Support@ yahoogroups. comDate: Saturday, August 2, 2008, 1:01 PM

Mama-Sher: Happy Birthday to You!!!!! And many more!!!!

Love & Toodles

Jane UIP/IPF 12/1998 Dalton. Georgia aka pianolady_musicgirl

>> Jane... I have to tell you how glad I am that your numbers are going up!> You deserve the best.> Love ya.> > MamaSher, age 69. IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Sildenafil Study Visit> > > > HI Everyone! Today was week 12 in the Step Trial. I had to have an ABG and some PFTs but not all of them. (didn't have to pant!), the other usual blood work (each arm had a stick). My PFTs were basically the same as before. My DL Adj improved to 9.0. (Previous scores: 7.9 & 8.9) I completed the 6 MW on room air, 21%. I walked 280 meters in 6 minutes on

room air with a 3 minute recovery of 95%, all on room air. Previously I completed the 6 MW and walked 258 meters on 4/25/8; 140 meters on 5/9/8 where I did not finish the walk because my sat dropped to 79% (it was a bad allergy day) and I finished the walk on 6/20/8 walking 270 meters. I am now officially on the drug. I have had two doses so far and I still feel the same. Won't ever know if I have been taking the drug or placebo. > > My doctor tells me my numbers are going up. I have to go back next Friday for another brief visit, no PFTs. The nurse is trying to get approval from Duke to raise the reinbursement. I hope it comes through next Friday.> > Hope everyone has a good weekend. > > Toodles!> > Jane UIP/IPF 12/1998 Dalton, Georgia aka

pianolady_musicgirl>

[Guest guest]

Jane, I'm so happy to hear you're doing so Well!

Have you already given out the school supplies to the children? How did it go?

If I miss it, I apologize I had a few scares this week...that I don't how much more my heart can take!

HugsIrenePF 03/07 Raynaud's Disease 09/07Crohn's Disease 03/95 Asthma 02/92

Re: Sildenafil Study Visit

Thank you, Bruce, (and Mama-Sher). I have been working very hard at making sure I go to exercise 3 times a week or 12 times in a month. I achieved 12 times per month in April, May, & June. Because of my hectic schedule, I only made 11 times in July, so I broke my record. I have to go back to Emory next Friday for another study visit. There will be no PFTs!!! Only to see the doctor & nurse.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

P.S. Bruce, do you remember when I had trouble walking back to the hotel from the Riverwalk when we were in San ? (On a Friday night after we left the barbecue restaurant)

> >> >> > HI Everyone! Today was week 12 in the Step Trial. I had to have an ABG> > and some PFTs but not all of them. (didn't have to pant!), the other> > usual blood work (each arm had a stick). My PFTs were basically the> > same as before. My DL Adj improved to 9.0. (Previous

scores: 7.9 & > > 8.9) I completed the 6 MW on room air, 21%. I walked 280 meters in 6> > minutes on room air with a 3 minute recovery of 95%, all on room air.> > Previously I completed the 6 MW and walked 258 meters on 4/25/8; 140> > meters on 5/9/8 where I did not finish the walk because my sat dropped> > to 79% (it was a bad allergy day) and I finished the walk on 6/20/8> > walking 270 meters. I am now officially on the drug. I have had two> > doses so far and I still feel the same. Won't ever know if I have been> > taking the drug or placebo.> >> > My doctor tells me my numbers are going up. I have to go back next> > Friday for another brief visit, no PFTs. The nurse is trying to get> > approval from Duke to raise the reinbursement. I hope it comes through> > next Friday.> >> > Hope everyone has a

good weekend.> >> > Toodles!> >> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >>

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[Guest guest]

Zena, that is the protoccol of the study. Placebo for the first 12 weeks and the drug for the next 12 weeks. They don't even know if I were on the drug or placebo.and I don't know who knows. After week 24, I will be off the drug for 4 weeks and then they will call me on the phone. I don't have pulmonary hpertension so I would not be able to continue on this drug until it is approved (and if it is approved) for IPF.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

> >> >> > HI Everyone! Today was week 12 inou the Step Trial. I had to have an> ABG> > and some PFTs but not all of them. (didn't have to pant!), the other> > usual blood work (each arm had a stick). My PFTs were basically the> > same as before. My DL Adj improved to 9.0. (Previous scores: 7.9 & > > 8.9) I completed the 6 MW on room air, 21%. I walked 280 meters in 6> > minutes on room air with a 3 minute recovery of 95%, all on room air.> > Previously I completed the 6 MW and walked 258 meters on 4/25/8; 140> > meters on 5/9/8 where I did not finish the walk because my sat dropped> > to 79% (it was a bad allergy day) and I finished the walk on 6/20/8> > walking 270 meters. I am now officially on the drug. I have had two> > doses so far and I still feel the same. Won't ever know if I have been> > taking the drug or placebo.> >> > My doctor tells me my numbers are going up. I have to go back next> > Friday for another brief visit, no PFTs. The nurse is trying to get> > approval from Duke to raise the reinbursement. I hope it comes through> > next Friday.> >> > Hope everyone has a good weekend.> >> > Toodles!> >> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >>