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He wasn't spamming the list. He was sending a link that might make it possible

for some of us to save money in talking to one another. The Lord knows we need

to be careful with every dime we get due to the costs of this nasty disease.

Dawn, mom of 4, 7 and under, the youngest wcf

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That's VERY true.

I just received an email , supposedly from 'me " -full name & email addy.

It was an ad for " enlargement meds-I couldn't believe it . I have sent

it to our computer people to see how that was stolen & used.. It was the

worst kind of spam.

PLEASE , don't anyone think I would send that trash!!.

I really thank Torsten for that. I am going to have them check her .as

you said. We have many friends aboard & that would be great!!

LOVE & HUGS, grandmomBEV

Re: Skype

He wasn't spamming the list. He was sending a link that might make it

possible for some of us to save money in talking to one another. The

Lord knows we need to be careful with every dime we get due to the costs

of this nasty disease.

Dawn, mom of 4, 7 and under, the youngest wcf

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  • 5 years later...

Peggy and Sher

did you two ever meet in person?

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: skypeTo: Breathe-Support Date: Wednesday, October 7, 2009, 4:27 PM

Hi Group, I talked with Sher on Skype today.. OH HOW SWEET. We were both rubbing our hair and knowing we needed a good hair doooo.

LOL I just can't care about that anymore. Lord I think that means I am officially old.

Anyhow let us know if your on Skype and we can chat-- face-to-face

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

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Hi Peggy and all you other Skypes and those considering transplant,

I've been on Skype since summer of 2008. My Skype name is CBAYJPW. If you are

going to call me send me an email in advance to my home email:

cbayjpw@... so I will know to turn my Skype program on as I don't leave

it on all the time. Since I had my lung transplant in Aug 2007 I wanted to see

my grandkids and son in Hawaii but wasn't up to traveling until this year so I

bought them and myself a Logitech Webcam so we could Skype. It has been great

although it hasn't been as perfect as Oprah's Skypes. Maile, my youngest grand

daughter who will be 3 the 28th of Jan. loves to call Grandma Judy on the Skype

and ends our calls with big hugs and kisses. The twin girls there are now almost

4.5 yrs old and they have hula lessons so also dance for me. Alika, my grandson

there was 7 in June and active in Soccer and Karate lessons after school until 2

weeks ago when he fell and broke his left arm. He has to wait for it to heal

before he can play soccer or karate again. :(

Regarding treatments for IPF, when I was diagnosed in Nov 06 I was already in

the end stage. I had been on Prednisone a number of times for respitory

problems which the various doctors kept saying was my Asthma or Bronchitis.

After having pneumonia in Feb. 06 I continued to cough so much I insisted on

seeing the pulm. doc again that fall and he finally ordered a lung scan that

Oct. which surprised him when he saw the results. I saw a new pulmonary doctor

a week later for a 2nd opinion and he scheduled the bronchoscope to do the lung

biopsy as an outpatient rather than an open lung biopsy. He prescribed

pulmonary rehab for me and when they gave me the 6 min. walk test (which they

said no one ever fails) I failed within 2 min. I was put on oxygen that night

24/7 on Jan. 26, 2006. In Feb. he told me he was going to recommend me for a

lung transplant or I only had 1 year to live. They began the pre transplant

test the end of April 2007, and a final test was done the end of June I believe.

I made the transplant list on Aug. 13, 2007 and had the transplant 9 days later

on Aug. 22, 2007. I always thought 13 was my lucky number & when they called me

that morning it was 3:13 a.m. They told me the first year was the hardest; but

for me it was the first 13 months with 3 treatments for rejection including the

lung collapse one time after a biopsy needle poked a hole into my new lung.

But, my lung has done so much better even though the right lung still has the

IPF. The transplant left lung does most of my breathing. The only time it

falls below 90 now is when I try to swim too many lengths of the pool without

resting at each end. Now I take my oximeter and lay it on a towel beside the

pool so I can check it after 2 lengths. I do my first 2 lengths face foreward

with a divers mask on; and only swim underwater 1/2 the length of the pool. I

had swam the entire length of the pool under water a couple of times and

suspected that wasn't too healthy for me. After my 2 face fordward lengths I

then do 10 more lengths doing back strokes and do my purse breathing exercise as

I swim. The 12 lengths swim equals 300 yds of swimming. Other pool memebers of

the senior pool have been amazed at how much I swim, how well I swim and then I

do 1/2 hour of physical therapy exercises in the water also.

I usually go 3 times a week but haven't been there in a week now due to my sever

scoliosis back problems and medical tests and treatments for same. My primary

doctor had an X ray done last Fri. and discovered that I had previously had 3

broken ribs, which my lung doctor said could have happened during the

transplant. I did have lots of pain after the transplant but they apparently

thought that was normal from the incision. Anyway this Mon. my primary doctor

also had a bone scan done of my entire body and I am supposed to get the results

tomorrow. Yesterday my pain doctor gave me numbing and anti inflamatory

injections for my back. If it helps then I am elgible to have a radio frequency

treatment that can kill the nerve causing the pain. I told my pain doctor that

when I emailed my brother a photo from my June MRI he replied " is that your

spine or a train crash " ; and she agreed with him.

So yes a transplant can be difficult; but believe me it is worth it to keep on

living and seeing your family. I have been only on 5mg of Prednisone this year,

down to one 250 mg CellCept twice a day, had my Prograf reduced from 7 mg a day

to 4 mg a day in June and put on 2 mg of Rapamune (once a day). These are all

the anti rejection meds; but today I have been taken completely off of Prograf

and my Rapamune was raised to 3 mg. I have to have another blood test done in 2

weeks to see how this works. I'm hoping it works well as Prograf does have lots

of side effects, but then all the anti rejection meds do. You just have to

learn to deal with it.

Love and Aloha,

Judy (Ohio) IPF 11/06 TX 8/07

>

> Hi Group, I talked with Sher on Skype today.. OH HOW SWEET. We were

> both rubbing our hair and knowing we needed a good hair doooo.

> LOL I just can't care about that anymore. Lord I think that means I

> am officially old.

> Anyhow let us know if your on Skype and we can chat-- face-to-face

>

>

>

>

> Love & Prayers, Peggy

> Florida, IPF/UIP 2004

>

> " I believe that friends are quiet angels who lift us to our feet,

> when our wings have trouble remembering how to fly. "

>

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No Pink, She is in Oregan and I'm in Fl.. I would love to meet her. I would love to meet everyone in our Group.Love & Prayers, Peggy Florida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Peggy and Sher did you two ever meet in person? Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- On Wed, 10/7/09, Peggy <pac1773 (AT) cfl (DOT) rr.com> wrote: From: Peggy <pac1773 (AT) cfl (DOT) rr.com>Subject: skypeTo: Breathe-Support Date: Wednesday, October 7, 2009, 4:27 PM Hi Group, I talked with Sher on Skype today.. OH HOW SWEET. We were both rubbing our hair and knowing we needed a good hair doooo. LOL I just can't care about that anymore. Lord I think that means I am officially old. Anyhow let us know if your on Skype and we can chat-- face-to-face Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."

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OOPS,,, make that OregOn.. lol Love & Prayers, Peggy Florida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." No Pink, She is in Oregan and I'm in Fl.. I would love to meet her. I would love to meet everyone in our Group.Love & Prayers, Peggy <pastedGraphic.tiff>Florida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Peggy and Sher did you two ever meet in person? Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- On Wed, 10/7/09, Peggy <pac1773 (AT) cfl (DOT) rr.com> wrote: From: Peggy <pac1773 (AT) cfl (DOT) rr.com>Subject: skypeTo: Breathe-Support Date: Wednesday, October 7, 2009, 4:27 PM Hi Group, I talked with Sher on Skype today.. OH HOW SWEET. We were both rubbing our hair and knowing we needed a good hair doooo. LOL I just can't care about that anymore. Lord I think that means I am officially old. Anyhow let us know if your on Skype and we can chat-- face-to-face Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."

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Peggy....our Skype call was great! and I talked for a few minutes...I didn't have long.

This is just about as good as meeting.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

skypeTo: Breathe-Support Date: Wednesday, October 7, 2009, 4:27 PM

Hi Group, I talked with Sher on Skype today.. OH HOW SWEET. We were both rubbing our hair and knowing we needed a good hair doooo. LOL I just can't care about that anymore. Lord I think that means I am officially old.

Anyhow let us know if your on Skype and we can chat-- face-to-face

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

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  • 2 months later...

Jane.... I was trying to bring you in on skype...you say your s-name is piano_ladymusicgirl.

Can't bring it up on skype. Your "from" post says pianolady_musicgirl....

Send me the correct one and I'll add you in. I'm having trouble with sound right now but I'm working on it with Peggy......

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

From: pianolady_musicgirl

Sent: Thursday, December 31, 2009 11:23 AM

To: Breathe-Support

Subject: Skype

Hi! Happy New Year Everyone!

I have skype and my skype is: piano_ladymusicgirl.

I would love to talk and chat with anyone who has skype.

Toodles!

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

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.123/2595 - Release Date: 12/31/09 00:52:00

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Pianolady, I see you got some snow in Dalton, all we have is cold rain.

Happy New Year PF 01/05 diabetis forever, pagents disease 1975 68yo Atlanta.

To: Breathe-Support Sent: Thu, December 31, 2009 2:23:46 PMSubject: Skype

Hi! Happy New Year Everyone!

I have skype and my skype is: piano_ladymusicgirl .

I would love to talk and chat with anyone who has skype.

Toodles!

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

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