Re: (unknown)

[Guest guest]

Jack,Merry Christmas, welcome home and keep on keeping on! Kathy ILD 3/08Subject: (unknown)To: "Breathe-Support Group" <Breathe-Support >Date: Thursday, December 24, 2009, 11:00 AM

I want to let you know that I am home stilll a bonofide walking, talking,

wise-ass human. Ifortunately came through very quickly with recovery of my abilities althoug I am still weak on the right side. I will continue my theapy as an out patient. I credit a group of wonderul nurses and

therapists for my recovery. I was with cards, flowers, and phone calls

from all over the country. That was a great booster. When I was first

admitted, a nurse asked me what I considered good nursing. Isaid

mothering and that is what I got and plenty of it. I will right later when

I am stronger of my experiences. I wish all of your and your families

a wonderful Christmas and a Happy New Year.

Love to all, JackJack79/IPF - UIP/dx06/05 Maine

[Guest guest]

Jack, It's wonderful to see your

post.

Stay well please..there's a warm new house waiting for you.

Happy Holidays and Happy New Year 2010

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07

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

Jack Marshall wrote:

I want to let you know that I am home stilll a bonofide walking,

talking,

wise-ass human. Ifortunately came through very quickly with

recovery of my abilities althoug I am still weak on the right side. I

will continue my theapy as an out patient. I credit a group of

wonderul nurses and

therapists for my recovery. I was with cards, flowers, and

phone calls

from all over the country. That was a great booster. When I

was first

admitted, a nurse asked me what I considered good nursing. Isaid

mothering and that is what I got and plenty of it. I will right

later when

I am stronger of my experiences. I wish all of your and your

families

a wonderful Christmas and a Happy New Year.

Love to all, Jack

Jack

79/IPF - UIP/dx06/05 Maine

[Guest guest]

Jack,

Glad to see you back posting. Are you

moved to NC or still dealing with the Maine

cold and snow? Get better.

Ken Baker UIP/IPF 12/05 New Hampshire

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Jack

Marshall

Sent: Thursday, December 24, 2009

2:01 PM

To: Breathe-Support Group

Subject:

(unknown)

I want to let you know that I am home stilll a bonofide walking,

talking,

wise-ass human. Ifortunately came through very quickly with

recovery of my abilities althoug I am still weak on the right side. I

will continue my theapy as an out patient. I credit a group of

wonderul nurses and

therapists for my recovery. I was with cards, flowers, and phone

calls

from all over the country. That was a great booster. When I

was first

admitted, a nurse asked me what I considered good nursing. Isaid

mothering and that is what I got and plenty of it. I will right

later when

I am stronger of my experiences. I wish all of your and your

families

a wonderful Christmas and a Happy New Year.

Love to all, Jack

Jack

79/IPF - UIP/dx06/05 Maine

[Guest guest]

Hi , Merry Christmas and Happy New Year! PJ in OH, 54, IPF09, Sjogren's95 (unknown)

I want to let you know that I am home stilll a bonofide walking, talking,

wise-ass human. Ifortunately came through very quickly with recovery of my abilities althoug I am still weak on the right side. I will continue my theapy as an out patient. I credit a group of wonderul nurses and

therapists for my recovery. I was with cards, flowers, and phone calls

from all over the country. That was a great booster. When I was first

admitted, a nurse asked me what I considered good nursing. Isaid

mothering and that is what I got and plenty of it. I will right later when

I am stronger of my experiences. I wish all of your and your families

a wonderful Christmas and a Happy New Year.

Love to all, JackJack79/IPF - UIP/dx06/05 Maine

[Guest guest]

Hi Jack, How good to hear from you. We have been worried about you. But the GOOD news is you are still you. I hope your Christmas has been perfect with all of your loved ones with you. I know they are so thankful too.Take Care of YOU and keep workin.

Love & PrayersPeggy, IPF 2004

I want to let you know that I am home stilll a bonofide walking, talking,

wise-ass human. Ifortunately came through very quickly with recovery of my abilities althoug I am still weak on the right side. I will continue my theapy as an out patient. I credit a group of wonderul nurses and

therapists for my recovery. I was with cards, flowers, and phone calls

from all over the country. That was a great booster. When I was first

admitted, a nurse asked me what I considered good nursing. Isaid

mothering and that is what I got and plenty of it. I will right later when

I am stronger of my experiences. I wish all of your and your families

a wonderful Christmas and a Happy New Year.

Love to all, JackJack79/IPF - UIP/dx06/05 Maine

[Guest guest]

HAPPY NEW YEAR AND HAPPY HANGOVER FROM JOE & JOANIE!!!!!!!!

   JOE & JOANIE LAMENSKIE

IPF JAN. 2008

-- (unknown)

A HAPPY AND PROSPEROUS NEW YEAR TO THE AIR FAMILY. MAY YOU ALL HAVE

APLENTITUDE OF OXYGEN. Jack79/IPF - UIP/dx06/05 Maine

[Guest guest]

I'm so glad you are recovering. I'm a little late with this because I have been off to the UWMC and I now have almost 500 posts to go through.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: (unknown)To: "Breathe-Support Group" <Breathe-Support >Date: Thursday, December 24, 2009, 11:00 AM

I want to let you know that I am home stilll a bonofide walking, talking,

wise-ass human. Ifortunately came through very quickly with recovery of my abilities althoug I am still weak on the right side. I will continue my theapy as an out patient. I credit a group of wonderul nurses and

therapists for my recovery. I was with cards, flowers, and phone calls

from all over the country. That was a great booster. When I was first

admitted, a nurse asked me what I considered good nursing. Isaid

mothering and that is what I got and plenty of it. I will right later when

I am stronger of my experiences. I wish all of your and your families

a wonderful Christmas and a Happy New Year.

Love to all, JackJack79/IPF - UIP/dx06/05 Maine

[Guest guest]

Beverly,I don't know whether or not I missed your post about UWMC, but how was it and what did you find out?Kathy ILD 3/08 Type 2 diabetes forever agoFrom: Jack Marshall <mrshlljck (AT) yahoo (DOT) com>Subject: (unknown)To: "Breathe-Support Group" <Breathe-Support@ yahoogroups. com>Date: Thursday, December 24, 2009, 11:00 AM

I want to let you know that I am home stilll a bonofide walking, talking,

wise-ass human. Ifortunately came through very quickly with recovery of my abilities althoug I am still weak on the right side. I will continue my theapy as an out patient. I credit a group of wonderul nurses and

therapists for my recovery. I was with cards, flowers, and phone calls

from all over the country. That was a great booster. When I was first

admitted, a nurse asked me what I considered good nursing. Isaid

mothering and that is what I got and plenty of it. I will right later when

I am stronger of my experiences. I wish all of your and your families

a wonderful Christmas and a Happy New Year.

Love to all, JackJack79/IPF - UIP/dx06/05 Maine

[Guest guest]

Welcome home BJ. First we worry and fret and can't wait for an appt and now it's over and done for now. lol.

Did you like Dr. Raghu?

Drop a line when you have the time.

MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there!

From: Beverley Joy

Sent: Friday, January 01, 2010 7:13 PM

To: Breathe-Support

Subject: Re: (unknown)

I'm so glad you are recovering. I'm a little late with this because I have been off to the UWMC and I now have almost 500 posts to go through.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: Jack Marshall <mrshlljck (AT) yahoo (DOT) com>Subject: (unknown)To: "Breathe-Support Group" <Breathe-Support >Date: Thursday, December 24, 2009, 11:00 AM

I want to let you know that I am home stilll a bonofide walking, talking,

wise-ass human. Ifortunately came through very quickly with recovery of my abilities althoug I am still weak on the right side. I will continue my theapy as an out patient. I credit a group of wonderul nurses and

therapists for my recovery. I was with cards, flowers, and phone calls

from all over the country. That was a great booster. When I was first

admitted, a nurse asked me what I considered good nursing. Isaid

mothering and that is what I got and plenty of it. I will right later when

I am stronger of my experiences. I wish all of your and your families

a wonderful Christmas and a Happy New Year.

Love to all, JackJack79/IPF - UIP/dx06/05 Maine

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.124/2596 - Release Date: 01/01/10 01:20:00

[Guest guest]

Happy New Year and a plentitude of oxygen to you too. I'm trying to catch up since I was gone. I still have 250 posts to read. How are you doing on your 2000? LOLBeverley Joy,71, Birds and mold 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: (unknown)To: "Breathe-Support Group" <Breathe-Support >Date: Thursday, December 31, 2009, 7:05 AM

A HAPPY AND PROSPEROUS NEW YEAR TO THE AIR FAMILY. MAY YOU ALL HAVE

APLENTITUDE OF OXYGEN. Jack79/IPF - UIP/dx06/05 Maine

[Guest guest]

I personally didn't spend enough time with Dr. Raghu to form an opinion but my pulmo thinks he is the best in the world. That's good enough for me. I liked his diagnosis but I believe that I need to get out of this house. It is next to a dirt road and it is always dusty. I've always felt that it was making me sick. Now I need to get an appointment with a Rheumatologist and see if I can get something done about the pain,Dr.Raghu insisted that I take Prednisone. He wanted me to take 10mg. I said no. That's what I have been on that caused all of the side effects. So he said would I take 5mg for 3 months I agreed but I didn't like it.Beverley Joy,71, Birds and mold 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: Jack Marshall <mrshlljck (AT) yahoo (DOT) com>Subject: (unknown)To: "Breathe-Support Group" <Breathe-Support@ yahoogroups. com>Date: Thursday, December 24, 2009, 11:00 AM

I want to let you know that I am home stilll a bonofide walking, talking,

wise-ass human. Ifortunately came through very quickly with recovery of my abilities althoug I am still weak on the right side. I will continue my theapy as an out patient. I credit a group of wonderul nurses and

therapists for my recovery. I was with cards, flowers, and phone calls

from all over the country. That was a great booster. When I was first

admitted, a nurse asked me what I considered good nursing. Isaid

mothering and that is what I got and plenty of it. I will right later when

I am stronger of my experiences. I wish all of your and your families

a wonderful Christmas and a Happy New Year.

Love to all, JackJack79/IPF - UIP/dx06/05 Maine

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.124/2596 - Release Date: 01/01/10 01:20:00

[Guest guest]

,

Hello and welcome once again to Breathe Support. I'm sorry you have reason to be here but I'm glad you found us.

As to your question, you mention that you have scleroderma and PAH and pf among other things. What medications are you on?

You will find people here on a variety of medications depending on what type of interstitial lung disease they have been diagnosed with. I have been on prednisone in the past, currently I am on Imuran to treat my dermatomyositis and hopefully prevent progression of my pulmonary fibrosis.

It really depends on your individual situation. Please tell us more about you. Where are you located? Are you happy with your physicians?

I'm happy that you have joined us here. This disease can be very isolating. Many of us have no one locally who 'gets it' the way the other members here do. I hope that you can find some of the support and friendship here that I have.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sat, January 9, 2010 5:46:24 PMSubject: (unknown)

sounds good patti has anyone have any ideas about meds for pf

[Guest guest]

what does your doctor say about meds?

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: (unknown)To: Breathe-Support Date: Saturday, January 9, 2010, 5:46 PM

sounds good patti has anyone have any ideas about meds for pf

[Guest guest]

your pulmo guy will let you know, or your doctor Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009To: Breathe-Support Sent: Sat, January 9, 2010 4:46:24 PMSubject:

(unknown) sounds good patti has anyone have any ideas about meds for pf

[Guest guest]

actually you can work part time, there is a monthly earned income limit

that's what they -- soc sec -- told me when i applied

don't remember what the monthly earned income limit was at that time

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: (unknown)To: Breathe-Support Date: Friday, January 15, 2010, 2:44 PM

I just received a call from the Medical Examining unit of the SS disability, and the gentlemen said he was sending my claim back to the field office for the final decision. Medically I qualify. You know how excited I am, and I'm also sad too I do so want to go to work. I guess I'll have to find some volunteering to do.

Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009

[Guest guest]

Congratulations !

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Fri, January 15, 2010 11:44:35 AMSubject: (unknown)

I just received a call from the Medical Examining unit of the SS disability, and the gentlemen said he was sending my claim back to the field office for the final decision. Medically I qualify. You know how excited I am, and I'm also sad too I do so want to go to work. I guess I'll have to find some volunteering to do.

Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009

[Guest guest]

,

The Imuran hasn't affected my hair that I've noticed. The hair on my head did get alot thinner while I was on prednisone three years ago. It hasn't ever regained it's former thickness but it seems stable. I also color my hair every 6 weeks or so, my natural color just to cover the grey. I'm just not ready to go grey yet.

It probably won't help if it's the Imuran but you might want to use Nioxin hair products for a couple of months to see if you can stop losing hair. About 5 years ago I was super stressed and was losing alot of hair. My dermatologist recommended Nioxin and after about a week of using them my hair stopped falling out and began to grow in. Most salons carry Nioxin products, they're not inexpensive but if it works it's worth it.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tue, January 26, 2010 12:22:55 AMSubject: (unknown)

Just have to get this off my chest, went to get my hair done tonight, Yes I color it otherwise I would be compltetely white no kidding. Doing this usually always makes me feel better but tonight it was pretty depressing. The gal who does my hair (good friend of mine) combed my hair out and she says oh my you are loosing alot of hair, and I said yep really started falling out about 3 weeks ago and more so this week. Ok so now I have to go to semi permanent can't get it colored for another 8-10 weeks ( and there will be a skunk strip by then), had to go shorter then I wanted this time. She felt pretty bad, said maybe if it continues we may have to buzz short. I said ok I can do a buzz cut. Takes alot of women to get there hair buzzed. And you know what I'm trying really hard to be a really strong women with this shitty disease.

Hopefully that won't happen, but if it does, you will most definitely see picturesSo is anyone else taking the Imuran having that problem? Or am I again one of the odd ones!!!!!!!! !!!!!!!!!

Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009

[Guest guest]

you know you can wax that LOL Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009To: Breathe-Support Sent: Tue, January 26, 2010 5:41:12 AMSubject: Re: (unknown)

,

I am also losing hair on my head and at the same time, I am growing hair on my face, so I have what looks like a beard. Gotta love it.

06

IPF 2/05

From: Gascoigne <michelle.gascoigne@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Tue, January 26, 2010 12:22:55 AMSubject: (unknown)

Just have to get this off my chest, went to get my hair done tonight, Yes I color it otherwise I would be compltetely white no kidding. Doing this usually always makes me feel better but tonight it was pretty depressing. The gal who does my hair (good friend of mine) combed my hair out and she says oh my you are loosing alot of hair, and I said yep really started falling out about 3 weeks ago and more so this week. Ok so now I have to go to semi permanent can't get it colored for another 8-10 weeks ( and there will be a skunk strip by then), had to go shorter then I wanted this time. She felt pretty bad, said maybe if it continues we may have to buzz short. I said ok I can do a buzz cut. Takes alot of women to get there hair buzzed. And you know what I'm trying really hard to be a really strong women with this shitty

disease.

Hopefully that won't happen, but if it does, you will most definitely see picturesSo is anyone else taking the Imuran having that problem? Or am I again one of the odd ones!!!!!!!! !!!!!!!!!

Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009

[Guest guest]

Thanks Beth I'll try. And the gray will never win with me!!!!!!!!!!!!!!!!!! Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009To: Breathe-Support Sent:

Tue, January 26, 2010 6:46:18 AMSubject: Re: (unknown)

,

The Imuran hasn't affected my hair that I've noticed. The hair on my head did get alot thinner while I was on prednisone three years ago. It hasn't ever regained it's former thickness but it seems stable. I also color my hair every 6 weeks or so, my natural color just to cover the grey. I'm just not ready to go grey yet.

It probably won't help if it's the Imuran but you might want to use Nioxin hair products for a couple of months to see if you can stop losing hair. About 5 years ago I was super stressed and was losing alot of hair. My dermatologist recommended Nioxin and after about a week of using them my hair stopped falling out and began to grow in. Most salons carry Nioxin products, they're not inexpensive but if it works it's worth it.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Gascoigne <michelle.gascoigne@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Tue, January 26, 2010 12:22:55 AMSubject: (unknown)

Just have to get this off my chest, went to get my hair done tonight, Yes I color it otherwise I would be compltetely white no kidding. Doing this usually always makes me feel better but tonight it was pretty depressing. The gal who does my hair (good friend of mine) combed my hair out and she says oh my you are loosing alot of hair, and I said yep really started falling out about 3 weeks ago and more so this week. Ok so now I have to go to semi permanent can't get it colored for another 8-10 weeks ( and there will be a skunk strip by then), had to go shorter then I wanted this time. She felt pretty bad, said maybe if it continues we may have to buzz short. I said ok I can do a buzz cut. Takes alot of women to get there hair buzzed. And you know what I'm trying really hard to be a really strong women with this shitty

disease.

Hopefully that won't happen, but if it does, you will most definitely see picturesSo is anyone else taking the Imuran having that problem? Or am I again one of the odd ones!!!!!!!! !!!!!!!!!

Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009

[Guest guest]

I hear ya. I am waiting to see what happens since I am currently being weaned from medience. Here's hoping my beard goes away so I don't have to wax it.

To: Breathe-Support Sent: Tue, January 26, 2010 8:26:28 AMSubject: Re: (unknown)

you know you can wax that LOL

Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009

From: <karenmary06@ yahoo..com>To: Breathe-Support@ yahoogroups. comSent: Tue, January 26, 2010 5:41:12 AMSubject: Re: (unknown)

,

I am also losing hair on my head and at the same time, I am growing hair on my face, so I have what looks like a beard. Gotta love it.

06

IPF 2/05

From: Gascoigne <michelle.gascoigne@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Tue, January 26, 2010 12:22:55 AMSubject: (unknown)

Just have to get this off my chest, went to get my hair done tonight, Yes I color it otherwise I would be compltetely white no kidding. Doing this usually always makes me feel better but tonight it was pretty depressing. The gal who does my hair (good friend of mine) combed my hair out and she says oh my you are loosing alot of hair, and I said yep really started falling out about 3 weeks ago and more so this week. Ok so now I have to go to semi permanent can't get it colored for another 8-10 weeks ( and there will be a skunk strip by then), had to go shorter then I wanted this time. She felt pretty bad, said maybe if it continues we may have to buzz short. I said ok I can do a buzz cut. Takes alot of women to get there hair buzzed. And you know what I'm trying really hard to be a really strong women with this shitty disease.

Hopefully that won't happen, but if it does, you will most definitely see picturesSo is anyone else taking the Imuran having that problem? Or am I again one of the odd ones!!!!!!!! !!!!!!!!!

Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009

[Guest guest]

Wow I hadn't thought about hair loss and color for so long.. I did loose hair but it came back. I colored it blond until I just got tired of it.. Well it turns out my hairis all white.. I started coloring my pretty alburn hair at 18 because of the white. If I had my hair color money back... that would be a chunk..I had a beard also, leave it alone and as you come off the pred. it will go away. I have some chin hair. When I go after them with my tweezers asks what I'm doing, I just tell him I'm plucking my eyebrows..

Love & PrayersPeggyIPF, 2004

[Guest guest]

BJ..... we just got home from Seattle and I saw Dr. Raghu. This man is so precious and kind he brings tears to my eyes! So caring about the 'stuff' that stresses me...

So.....he wants another sleep study done...IN THE LAB. He wanted this last time but my local pulmodude over rode him (that kinda po'd me) and ordered the overnight at home.

So....I saw a Fellow (woman) who zoomed right in on the sleep apnea. She is fairly positive that my breathing problems/cognition changes have to do with sleep apnea/lack of O2.

He is going to put me on PREDNISONE for 3 months. Yuck! I don't really want to do this but.....we'll trial it for 3 months and then may try Viagra for the PH. But the COST of Viagra is like a down pmt on a house! every month....

But that's where I am today. Sleep study and Prednisone. SOB is getting worse so it's time to do something, although the SATS don't drop drastically. My 6MW dropped to 90....

I go back in May again. Rates will go up at the INN but I'm calling on Monday and requesting a rate adjustment 'cause we are there regularly.

Hugs to you.

MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there!

From: Beverley Joy

Sent: Wednesday, January 27, 2010 5:34 PM

To: Breathe-Support

Subject: Re: (unknown)

Sher, When I lived on the coast I had wavy hair and I didn't have to have perms. I hate them. At least I don't have to pay for them. Thank you for the compliment. Yes, it is what it is. Isn't tomorrow your appointment at the UW? Are you at the inn or are you going to set out early in the morning. My April appointment is at 11:30. It takes us about 7 hours to get there but I can stay at my daughter's in Gig Harbor and go from there so I won't have to rent a room.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia Idaho

From: Sher <bofus6 (AT) verizon (DOT) net>Subject: Re: (unknown)To: Breathe-Support Date: Wednesday, January 27, 2010, 10:57 AM

BJ.... I'm letting my hair grow naturally too. White or whatever color shows itself!

I'm tired of the constant coloring. I gave up perms years ago. My 'fried and dye' routine I called it. Actually, it doesn't look too bad. I'm not totally white but oh well if I turn a 'white-head' .

Your hair is lovely BJ and I know meds makes a huge difference in the quality of our hair.

It is what it is, huh friend!

MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there!

From: Beverley Joy

Sent: Tuesday, January 26, 2010 9:37 PM

To: Breathe-Support@ yahoogroups. com

Subject: Re: (unknown)

I like my white hair. I earned everyone of them and coloring is too much anymore.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren' s,Fibromyalgia Idaho-

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: 01/30/10 11:35:00

[Guest guest]

Sher, Aside from a second opinion I thought that my pulmo dude would work with Dr. Raghu. He said he would try but he didn't think he could get him so I should call. Dr. Raghu wanted me on Pred for 3 months too but it through me right back into Diabetes and that caused my kidneys to get worse. I thought that Dr. Raghu would take the news better from him. I can't even take the CellCept like he told me to. He may not be happy when I go back in April. I hope you can get the sleep apnea under control. That is what caused my husbands death. How much is the Inn going up? If I can get my appointments late enough I won't have to go there again. I can get up early enough to get there from my daughter's house. I'm glad that you are so happy with Dr. Raghu.Beverley Joy,71,PF 1-09, Chronic HP, birds and mold

12-09,Sjogren's,Fibromyalgia Idaho

From: Sher <bofus6 (AT) verizon (DOT) net>Subject: Re: (unknown)To: Breathe-Support@ yahoogroups. comDate: Wednesday, January 27, 2010, 10:57 AM

BJ.... I'm letting my hair grow naturally too. White or whatever color shows itself!

I'm tired of the constant coloring. I gave up perms years ago. My 'fried and dye' routine I called it. Actually, it doesn't look too bad. I'm not totally white but oh well if I turn a 'white-head' .

Your hair is lovely BJ and I know meds makes a huge difference in the quality of our hair.

It is what it is, huh friend!

MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there!

From: Beverley Joy

Sent: Tuesday, January 26, 2010 9:37 PM

To: Breathe-Support@ yahoogroups. com

Subject: Re: (unknown)

I like my white hair. I earned everyone of them and coloring is too much anymore.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren' s,Fibromyalgia Idaho-

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: 01/30/10 11:35:00

[Guest guest]

Sher

Glad about the sleep study order. While overnight oximeters at home are

fine, I don't like the sleep studies being attempted at home. They are

less complete and they miss technician notes and observations which can

be very important. There is no way to try different things at home. It's

just not conducive in my opinion. It would be like doing your pulmonary

function tests at home with no technician. Sleep is such a foundation

for everything.

Yes, the Revatio for PH is quite expensive. I don't know if Pfizer has

any programs you might be eligible for. But it will push you into and

through the doughnut hole in a hurry. Would have been somewhat tolerable

had the portion of the health care proposals where the insurers had

agreed to half price during the doughnut hole passed. With my

prescription plan it would run a little over $900 so would cost $300 for

a month or two, then $900 for three or four months and then $40-50 or

so. For those of us already going deep into or through the doughnut hole

the Revatio doesn't add as much cost as it moves it forward.

Good luck with the prednisone. It's generally effective for cellular

NSIP. If you haven't been referred to a dietician I'd recommend it (as

well as a counselor actually). He'll give you meds for other side

effects but as to the weight and risk of diabetes and mood swings, be

ready to address them upfront and maybe they won't materialize because

of your proactive behavior.

>

>

> From: Sher bofus6@...

> Subject: Re: (unknown)

> To: Breathe-Support

> Date: Wednesday, January 27, 2010, 10:57 AM

>

>

>

>

> BJ.... I'm letting my hair grow naturally too. White or

whatever color shows itself!

> I'm tired of the constant coloring. I gave up perms years ago.

My 'fried and dye' routine I called it. Actually, it doesn't look too

bad. I'm not totally white but oh well if I turn a 'white-head' .

> Your hair is lovely BJ and I know meds makes a huge difference

in the quality of our hair.

> It is what it is, huh friend!

> MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.

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

>

>

>

> From: Beverley Joy

> Sent: Tuesday, January 26, 2010 9:37 PM

> To: Breathe-Support@ yahoogroups. com

> Subject: Re: (unknown)

>

>

> I like my white hair. I earned everyone of them and

coloring is too much anymore.

>

> Beverley Joy,71,PF, Chronic HP, birds and mold

1-09,Sjogren' s,Fibromyalgia Idaho

>

> -

>

>

>

>

>

>

>

>

------------------------------------------------------------------------\

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>

>

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date:

01/30/10 11:35:00

>

[Guest guest]

BJ.... in my opinion, your pulmodude telling you he didn't think he "could get him" is so lame! Dr's have the inside track when they call. (usually). I am only being compliant with Dr. Raghu...he knows my feelings about it and we talked about it. So I'll give it 3 months.

To do nothing can't be an option for me... even if I am dead set (whoops, wrong word!) against prednisone, I feel inclined to use it if Raghu Rxs when he knows I don't like taking it.

BJ... here is the email for /Carolyn. Send to them both. (send to one, cc the other).

cspada@... or jmhayes@...

they are both Dr. Raghu's assistant. They can take a msg to him and get back to you. He should know you are not taking the prednisone as Rx.

I'm sure sorry your Diabetes flared up and then kidney trouble. Raghu can help you with the nasty side effects if he knows. I can't see Raghu UNHAPPY about a patient. He is apt to be surprised if you aren't on anything, though. It seems it's hell if we do and hell if we don't. (Like prednisone for me).

I've been on cpap for a number of years and didn't suspect that could be the cause of the SOB that's been getting worse for quite a while. I naturally thought I am "being treated" for apnea....

I'm not sure but I think Rich was told the summer rate would be $92. But that would be before any discounts, senior or otherwise. I'm going to call tomorrow and find out for sure. We'll be going again in May.

I'll let you know.

MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there!

From: Beverley Joy

Sent: Saturday, January 30, 2010 3:36 PM

To: Breathe-Support

Subject: Re: (unknown)

Sher, Aside from a second opinion I thought that my pulmo dude would work with Dr. Raghu. He said he would try but he didn't think he could get him so I should call. Dr. Raghu wanted me on Pred for 3 months too but it through me right back into Diabetes and that caused my kidneys to get worse. I thought that Dr. Raghu would take the news better from him. I can't even take the CellCept like he told me to. He may not be happy when I go back in April. I hope you can get the sleep apnea under control. That is what caused my husbands death. How much is the Inn going up? If I can get my appointments late enough I won't have to go there again. I can get up early enough to get there from my daughter's house. I'm glad that you are so happy with Dr. Raghu.Beverley Joy,71,PF 1-09, Chronic HP, birds and mold 12-09,Sjogren's,Fibromyalgia Idaho

From: Sher <bofus6 (AT) verizon (DOT) net>Subject: Re: (unknown)To: Breathe-Support@ yahoogroups. comDate: Wednesday, January 27, 2010, 10:57 AM

BJ.... I'm letting my hair grow naturally too. White or whatever color shows itself!

I'm tired of the constant coloring. I gave up perms years ago. My 'fried and dye' routine I called it. Actually, it doesn't look too bad. I'm not totally white but oh well if I turn a 'white-head' .

Your hair is lovely BJ and I know meds makes a huge difference in the quality of our hair.

It is what it is, huh friend!

MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there!

From: Beverley Joy

Sent: Tuesday, January 26, 2010 9:37 PM

To: Breathe-Support@ yahoogroups. com

Subject: Re: (unknown)

I like my white hair. I earned everyone of them and coloring is too much anymore.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren' s,Fibromyalgia Idaho-

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: 01/30/10 11:35:00

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: 01/30/10 11:35:00