Re: Re: New to the group/Dyane

[Guest guest]

Dyane:

Today's prednisone-induced cooking frenzy will produce "posole" - a Mexican dish made with ground pork, hominy, tomatillos, tortillas, and other good stuff. I love all kinds of foods, and my husband is particularly fond of Mexican food. He lived in New Mexico for 20 years, and misses the quality of food that can easily be obtained there. Actually almost 14 years ago, while he was living in NM and I in NYC, we met on the internet. We've been married 13 years now.

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Wednesday, August 19, 2009 12:34:41 AMSubject: Re: New to the group

Hello Annette, My name is Dyane and I live 'down' in Phoenix. I was new to this board just a few months ago even though I've been diagnosed for going on 8 years...so don't let that 3-5 years in all the information scare you. We are all different and progress at different rates. The fact that you are up there in elevation may be part of the problem, if you were down here you would probably not notice as much. Altitude does matter. You will learn sooo much on this board. Without the board I would never have known and had the nerve to get an appointment at National Jewish. I have a week long apt in November and I really feel simply being able to talk to an "expert" in this disease will be worth it. My pulmodudette freely admits she is not an ILD expert. Feel free to ask questions, rant, whine, and go off on tangents (ask Barbara whats shes cooking..the kugel

sounded delicious). This group really 'gets' it when it comes to understanding how you feel. My own dx was in 2002 after almost dying in the hospital, but after 9 months I was stable and off o2. I stayed that way until Dec of 2007 when I realized my saturation levels were dropping way too low and put myself back on the o2. 2008 was a bit of a slide and now if I was 100 lbs lighter I would be evaluated for a lung transplant. At the same time, I'm still working full time. Luckily I'm an accountant and can sit on my butt most of the time. LOL Some of us are on prednisone and imuran, others on other drugs. We have a tendency to have missed diagnoses, a lot of autoimmune/connecti ve tissue issues that seem to go hand in hand with the dx of ifp. The amount of information you will get from this board is tremendous. Feel free to email me or call me, I'm listed in the contact list. Joyce Rudy is another

arizonan, she lives up in Prescott Valley. Dyane 53 Phoenix IPF 02>> Hello, > > I'm new to the group, my name is Annette and I live in the White Mountains of Arizona. I was dx with Pulmonary Fibrosis yesterday after they did a right heart cath to confirm a dx of Pulmonary Hypertension. Once they saw my heart and lungs, they discovered I did not have PH but PF. I had never heard of Pulmonary Fibrosis before and immediately started doing research on what this was exactly. To give you a little history, I was dx with asthma about 9+ years ago and have been on every medication there is and none have really helped. After my last attack about 2 months ago they noticed my oxygen wasn't stable and had to put me on oxygen 24/7. At that time they started running all kinds of test to determine what else could be wrong. My

pulmonologist sent me to a cardiologist and after many tests and heart/lung cath. they told me I had Pulmonary Fibrosis. > > At this point in my life I'm not really able to do much, I'm very limited in my activities of daily living. Will I continue to get worse and my activities even more limited? Also, how quickly have you noticed your symptoms getting worse? For me, I might be able to do something for 3-4 months and than the next day it will knock me on my rear! Sorry for all the questions, but since I've been given a confirmed dx I would like to know as much about this disease as I can. > > I appreciate you taking the time to read this and comment..Looking forward to getting to know this group.> > Thank you,> Annette>

[Guest guest]

wow

what a neat story

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: New to the group/DyaneTo: Breathe-Support Date: Wednesday, August 19, 2009, 10:20 AM

Dyane:

Today's prednisone-induced cooking frenzy will produce "posole" - a Mexican dish made with ground pork, hominy, tomatillos, tortillas, and other good stuff. I love all kinds of foods, and my husband is particularly fond of Mexican food. He lived in New Mexico for 20 years, and misses the quality of food that can easily be obtained there. Actually almost 14 years ago, while he was living in NM and I in NYC, we met on the internet. We've been married 13 years now.

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

From: dyanebillings <dyane.billings@ ball-mcgraw. com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, August 19, 2009 12:34:41 AMSubject: Re: New to the group

Hello Annette, My name is Dyane and I live 'down' in Phoenix. I was new to this board just a few months ago even though I've been diagnosed for going on 8 years...so don't let that 3-5 years in all the information scare you. We are all different and progress at different rates. The fact that you are up there in elevation may be part of the problem, if you were down here you would probably not notice as much. Altitude does matter. You will learn sooo much on this board. Without the board I would never have known and had the nerve to get an appointment at National Jewish. I have a week long apt in November and I really feel simply being able to talk to an "expert" in this disease will be worth it. My pulmodudette freely admits she is not an ILD expert. Feel free to ask questions, rant, whine, and go off on tangents (ask Barbara whats shes cooking..the kugel

sounded delicious). This group really 'gets' it when it comes to understanding how you feel. My own dx was in 2002 after almost dying in the hospital, but after 9 months I was stable and off o2. I stayed that way until Dec of 2007 when I realized my saturation levels were dropping way too low and put myself back on the o2. 2008 was a bit of a slide and now if I was 100 lbs lighter I would be evaluated for a lung transplant. At the same time, I'm still working full time. Luckily I'm an accountant and can sit on my butt most of the time. LOL Some of us are on prednisone and imuran, others on other drugs. We have a tendency to have missed diagnoses, a lot of autoimmune/connecti ve tissue issues that seem to go hand in hand with the dx of ifp. The amount of information you will get from this board is tremendous. Feel free to email me or call me, I'm listed in the contact list. Joyce Rudy is another

arizonan, she lives up in Prescott Valley. Dyane 53 Phoenix IPF 02>> Hello, > > I'm new to the group, my name is Annette and I live in the White Mountains of Arizona. I was dx with Pulmonary Fibrosis yesterday after they did a right heart cath to confirm a dx of Pulmonary Hypertension. Once they saw my heart and lungs, they discovered I did not have PH but PF. I had never heard of Pulmonary Fibrosis before and immediately started doing research on what this was exactly. To give you a little history, I was dx with asthma about 9+ years ago and have been on every medication there is and none have really helped. After my last attack about 2 months ago they noticed my oxygen wasn't stable and had to put me on oxygen 24/7. At that time they started running all kinds of test to determine what else could be wrong. My

pulmonologist sent me to a cardiologist and after many tests and heart/lung cath. they told me I had Pulmonary Fibrosis. > > At this point in my life I'm not really able to do much, I'm very limited in my activities of daily living. Will I continue to get worse and my activities even more limited? Also, how quickly have you noticed your symptoms getting worse? For me, I might be able to do something for 3-4 months and than the next day it will knock me on my rear! Sorry for all the questions, but since I've been given a confirmed dx I would like to know as much about this disease as I can. > > I appreciate you taking the time to read this and comment..Looking forward to getting to know this group.> > Thank you,> Annette>