Re: Lurker Alert/Living With IPF Seminar

September 14, 2007

Dear Kathy, So glad you posted. You really are super and I hope we get to hear from you more often- Sarcoid/PF 3/2006superkath48 wrote: I've been reading since February but this is my first posting (I think??) About me I am married, 58 years, have nonspecific interstitial pneumonia of the fibrotic (idiopathic) variety and secondary pulmonary hypertension, chronic bronchitis, secondary diabetes (when the pred dosage goes up over 10 I have to start monitoring and treating)fibromyagia,

some vague muscoskelatal disease, kidney disfunction and gout, sleep apnea and the various ailments that come along with time like arthritis.(I still think I am 46, time seemed to stop then in many ways) I have taken Imuran, Cytoxan, gama 1b interferon and Bosetan. I am on 02 24/7 from 2 to 6 lpm and have been consistently for the last 4 years although I have been on and off it since I was first diagnosed. It is almost 12 years ago that I was first dx' although that dx has changed several times. 11 years ago I 46, single, working at a job I loved and was financially secure. My 2 daughters were grown, one was married and the other had just given birth to my first grandchild. I was happy but very busy with very little balance in my life. Since then there have been many tests, hospital visits, medication changes, hopes, disappointments and even a lung transplant evaluation. The one thing that

has remained constant is my faith and my decision that this illness was not going to become "my life". This illness, as cruel as it is, has offered me so many blessings. I was forced to quit work almost immediately, fortunately for the first time in my woring life I had long term disability insurance and received ssd benefits on the first application. Money was tight but I was so much luckier than others and I was able to continue my insurance under Cobra. I was able to be with my daughter and the new grandson much more than I would have if I had been working. Ten years ago I married, another blessing I might have missed. He says I wouldn't have had enough time for him if I was still working. I say he wouldn't have married me if he knew it would be for 10+ yrs instead of 3- 5. lol At different times I was well enough to make solo trips to visit my other daughter in CA, my mom and Aunt in AZ and

could spend 4 weeks a year during the winter at families' in the Phoeniz area. I live in Tacoma, WA. But the biggest and best blessing I received because of this illness, is the time I suddenly had to reconnect to the "now", renew my faith and become involved with a Church, volunteering and helping other people. I also was able to work with a amily/children's agency and was blessed to be able to work with families with babies at risk and mentor single mothers who just needed someone to listen. I reconnected with friends and discovered e-mail. I have made new friends and have time for "girl friends". As time has progressed some activities I have had to let go, there have been hospital visits, I have had to use a wheel chair (not now, though)I can't drive very far and large groups of people do me in. But I still have my beloved husband, my family, my friends, my two dogs, my faith and I can read, lay

down, talk to a friend, just say no whenever I want. And as my hubby says "some days are better than others". We have 2 small dogs, a pom, Gracie 3yrs old and Mitzie, pom/maltese mix named after a restaurant. For those in this area the following is about the seminar: Dear Friend of the CPF: The Coalition for Pulmonary Fibrosis (CPF), in partnership with University of Washington Medical Center in Seattle, Wash., is hosting a free seminar on Oct. 13, 2007 for patients and families living with idiopathic pulmonary fibrosis (IPF). To view complete information on the event, please click the following link: http://www.coalitionforpf.org/AboutUs/events/seattle07.asp The seminar will feature nationally recognized experts in the treatment and study of IPF, including Ganesh Raghu, MD, University

of Washington Medical Center; , MD, University of Texas, Southwestern; , MD, The Mayo Clinic, sdale; and Hal Collard, MD, University of California, San Francisco and Mulligan, MD, University of Washington Medical Center. We look forward to seeing you at this important event! For information or to RSVP, please call the CPF at , or email us at infocoalitionforpf (DOT) org Sincerely, The Staff of the CPF Thanks for being here! Kathie Tacoma, WA NSIP 1995, PH 2002 (did i do this right?) Sarcoid/PF 3/2006

Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos more.

September 14, 2007

Kathy,

So glad you posted. If you have been reading posts, you know all of us pretty well. You have really had a multitude of medical problems during the last few years. You have a wonderful attitude, however. I respect that.

Hang around. We are glad to have you here!

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. I've been reading since February but this is my first posting (I > think??) About me I am married, 58 years, have nonspecific> interstitial pneumonia of the fibrotic (idiopathic) variety and> secondary pulmonary hypertension, chronic bronchitis, secondary > diabetes (when the pred dosage goes up over 10 I have to start > monitoring and treating)fibromyagia, some vague muscoskelatal > disease, kidney disfunction and gout, sleep apnea and the various > ailments that come along with time like arthritis.(I still think I am > 46, time seemed to stop then in many ways)> > I have taken Imuran, Cytoxan, gama 1b interferon and Bosetan. I am> on 02 24/7 from 2 to 6 lpm and have been consistently for the last 4 > years although I have been on and off it since I was first> diagnosed. It is almost 12 years ago that I was first dx' although > that dx has changed several times.> > 11 years ago I 46, single, working at a job I loved and was > financially secure. My 2 daughters were grown, one was married and > the other had just given birth to my first grandchild. I was happy > but very busy with very little balance in my life. Since then there > have been many tests, hospital visits, medication changes, hopes, > disappointments and even a lung transplant evaluation. The one thing > that has remained constant is my faith and my decision that this > illness was not going to become "my life".> > This illness, as cruel as it is, has offered me so many blessings. I> was forced to quit work almost immediately, fortunately for the first > time in my woring life I had long term disability insurance and > received ssd benefits on the first application. Money was tight but I > was so much luckier than others and I was able to continue my > insurance under Cobra. I was able to be with my daughter and the new > grandson much more than I would have if I had been working. Ten years > ago I married, another blessing I might have missed. He says I > wouldn't have had enough time for him if I was still working. I say > he wouldn't have married me if he knew it would be for 10+ yrs > instead of 3- 5. lol> > At different times I was well enough to make solo trips to visit my> other daughter in CA, my mom and Aunt in AZ and could spend 4 weeks a> year during the winter at families' in the Phoeniz area. I live in> Tacoma, WA. But the biggest and best blessing I received because of > this illness, is the time I suddenly had to reconnect to the "now", > renew my faith and become involved with a Church, volunteering and > helping other people. I also was able to work with a amily/children's > agency and was blessed to be able to work with families with babies > at risk and mentor single mothers who just needed someone to listen. I> reconnected with friends and discovered e-mail. I have made new> friends and have time for "girl friends".> > As time has progressed some activities I have had to let go, there> have been hospital visits, I have had to use a wheel chair (not now,> though)I can't drive very far and large groups of people do me in.> But I still have my beloved husband, my family, my friends, my two> dogs, my faith and I can read, lay down, talk to a friend, just say> no whenever I want. And as my hubby says "some days are better than> others". We have 2 small dogs, a pom, Gracie 3yrs old and Mitzie, > pom/maltese mix named after a restaurant.> > For those in this area the following is about the seminar:> > Dear Friend of the CPF: > > The Coalition for Pulmonary Fibrosis (CPF), in partnership with > University of Washington Medical Center in Seattle, Wash., is hosting > a free seminar on Oct. 13, 2007 for patients and families living with > idiopathic pulmonary fibrosis (IPF). > > To view complete information on the event, please click the following > link: > > http://www.coalitionforpf.org/AboutUs/events/seattle07.asp > > The seminar will feature nationally recognized experts in the > treatment and study of IPF, including Ganesh Raghu, MD, University of > Washington Medical Center; , MD, University of Texas, > Southwestern; , MD, The Mayo Clinic, sdale; and Hal > Collard, MD, University of California, San Francisco and > Mulligan, MD, University of Washington Medical Center. > > We look forward to seeing you at this important event! For > information or to RSVP, please call the CPF at , or email > us at info@...> > Sincerely,> > The Staff of the CPF> > Thanks for being here!> Kathie Tacoma, WA> NSIP 1995, PH 2002 (did i do this right?)> > > > > > > Sarcoid/PF 3/2006> > > ---------------------------------> Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos & more.>

September 14, 2007

Kathie, Welcome fellow fibriotic NSIP person!!!!!!

Just reading your post made my day....12 years sounds really good to

me!!!!

I've read so many different time spans...the longer the better!! I'm

63, married, 3 married kids, one grand daughter

and one new baby due in February. We're packing to move to a more

accessible ranch house and this house is on the market.

I also stopped working after becoming ill.( Spring 2005)..my illness

came out of nowhere with no other contributing

condition. After the OLB my dx was confirmed after just about 4

months of symptoms.

Again...welcome aboard and have a great week-end.

Z fibriotic NSIP/05

Z fibriotic NSIP/o5/PA

Potter, reader,carousel lover and

MomMom to Darah

“I’m gonna be iron like a lion in Zion”

Bob Marley

superkath48 wrote:

I've been reading since February but this is my first posting (I

think??) About me I am married, 58 years, have nonspecific

interstitial pneumonia of the fibrotic (idiopathic) variety and

secondary pulmonary hypertension, chronic bronchitis, secondary

diabetes (when the pred dosage goes up over 10 I have to start

monitoring and treating)fibromyagia, some vague muscoskelatal

disease, kidney disfunction and gout, sleep apnea and the various

ailments that come along with time like arthritis.(I still think I am

46, time seemed to stop then in many ways)

I have taken Imuran, Cytoxan, gama 1b interferon and Bosetan. I am

on 02 24/7 from 2 to 6 lpm and have been consistently for the last 4

years although I have been on and off it since I was first

diagnosed. It is almost 12 years ago that I was first dx' although

that dx has changed several times.

11 years ago I 46, single, working at a job I loved and was

financially secure. My 2 daughters were grown, one was married and

the other had just given birth to my first grandchild. I was happy

but very busy with very little balance in my life. Since then there

have been many tests, hospital visits, medication changes, hopes,

disappointments and even a lung transplant evaluation. The one thing

that has remained constant is my faith and my decision that this

illness was not going to become "my life".

This illness, as cruel as it is, has offered me so many blessings. I

was forced to quit work almost immediately, fortunately for the first

time in my woring life I had long term disability insurance and

received ssd benefits on the first application. Money was tight but I

was so much luckier than others and I was able to continue my

insurance under Cobra. I was able to be with my daughter and the new

grandson much more than I would have if I had been working. Ten years

ago I married, another blessing I might have missed. He says I

wouldn't have had enough time for him if I was still working. I say

he wouldn't have married me if he knew it would be for 10+ yrs

instead of 3- 5. lol

At different times I was well enough to make solo trips to visit my

other daughter in CA, my mom and Aunt in AZ and could spend 4 weeks a

year during the winter at families' in the Phoeniz area. I live in

Tacoma, WA. But the biggest and best blessing I received because of

this illness, is the time I suddenly had to reconnect to the "now",

renew my faith and become involved with a Church, volunteering and

helping other people. I also was able to work with a amily/children's

agency and was blessed to be able to work with families with babies

at risk and mentor single mothers who just needed someone to listen. I

reconnected with friends and discovered e-mail. I have made new

friends and have time for "girl friends".

As time has progressed some activities I have had to let go, there

have been hospital visits, I have had to use a wheel chair (not now,

though)I can't drive very far and large groups of people do me in.

But I still have my beloved husband, my family, my friends, my two

dogs, my faith and I can read, lay down, talk to a friend, just say

no whenever I want. And as my hubby says "some days are better than

others". We have 2 small dogs, a pom, Gracie 3yrs old and Mitzie,

pom/maltese mix named after a restaurant.

For those in this area the following is about the seminar:

Dear Friend of the CPF:

The Coalition for Pulmonary Fibrosis (CPF), in partnership with

University of Washington Medical Center in Seattle, Wash., is hosting

a free seminar on Oct. 13, 2007 for patients and families living with

idiopathic pulmonary fibrosis (IPF).

To view complete information on the event, please click the following

link:

http://www.coalitionforpf.org/AboutUs/events/seattle07.asp

The seminar will feature nationally recognized experts in the

treatment and study of IPF, including Ganesh Raghu, MD, University of

Washington Medical Center; , MD, University of Texas,

Southwestern; , MD, The Mayo Clinic, sdale; and Hal

Collard, MD, University of California, San Francisco and

Mulligan, MD, University of Washington Medical Center.

We look forward to seeing you at this important event! For

information or to RSVP, please call the CPF at , or email

us at infocoalitionforpf (DOT) org

Sincerely,

The Staff of the CPF

Thanks for being here!

Kathie Tacoma, WA

NSIP 1995, PH 2002 (did i do this right?)

No virus found in this incoming message.

Checked by AVG Free Edition. Version: 7.5.487 / Virus Database: 269.13.19/1008 - Release Date: 9/14/2007 8:59 AM

September 14, 2007