Re: Joyce and Peggy

[Guest guest]

Hi Joyce, You and Peggy have so much faith, and I love to read your posts. I have to be so reminded of that often. A close pastor friend of ours said to me in an email, "Remember God is in control and He knows what he is doing." That really is comforting to know that we aren't alone in this great big world. Have a good day girls. K IllinoisJoyce wrote: Jo Ann, You have every right to be in a state of shock. There are so many on this board who found out what Pulmonary Fibrosis was in the same way that you did. A doctor that would do that to a patient should lose his/her liscence. It is cruel! When I had my biopsy and diagnosed, the pulmonologist explained in detail, even drew pictures to explain. He did tell us 2-4 years....but that was 11 years ago. He kept telling me how lucky I was and I always corrected him to say that it was not luck, but faith. I told him and I know that God is in control and prayer works! It has not been an easy road, but I love life and whatever it takes....I will do. I have seen several pulmonary docs for evaluation and consults, etc. Doctor's are not the same. Some have hearts! You are so wise to be seeking better evaluation and care at a Center of Excellence hospital. Even though there are no effective treatment or cure, there are many ways to make our quality of life better. The realistic goal for us is to become stable. No progression is a wonderful thing. A good doctor will really work toward this end. Find one! Come back and let us learn from you. We are good folk to lean on when you are down. Welcome. 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>> > > Note: forwarded message attached.> > > Note: forwarded message attached.> Hi Joyce and everyone on the board. I feel like I already know you. My name is Jo Ann I am a NEWBIE and also a LURKER. I was DX with PF in Sept 07. I had been DX with Asthma for about 10 years. My breathing never got better with medicine.Every couple years I would change Doctors. New doctor still no improvement, finialy last year another doctor,didn't like the way I was breathing so he sent me for chest x-ray and a CT scan. He called me and said he was sending me to a Pulminary doctor. First visit with Pulminary doctor he tells me I have PF and I need a Lung Biopsy. Then he says "I know this is a

lot to think about I will see you in 2-3 weeks. That is it.> He never told me what PF was. I was more worried about a Lung Biopsy. I went home and went on the Internet and tried to find about a Biopsy. 2 weeks later I decided to check out PF I was shocked. I had no idea what PF was. I thought it was just some simple thing that the doctor could give me some medicine and I would be fine. He never explained it to me. At that ime I tried to find a support group and I joined this board. I read posts and was so scared that I had to leave the board, I couldn't take it.> I had my VATS in Oct 07 DX was UIP Saw the doctor in Nov. he said there was no medicine I could take, and that he would see me in 3 months and do PFTs and CT scan to see if any change. I saw him in Feb. he did PFTs no CT scan. Had nursre call me to tell me the results. Wouldn't even see me. I am so disappoiinted in this doctor. Has anyone else had these same problems with there doctor?>

> I rejoined this board in Jan. This time around I was more ready to deal with this horrible disease. I have learned soo much from all of you. THANK YOU I am going to see about one of the Doctors at a Center of Excellence.> I am going back to my Pulminoligist next week because I am having trouble breathing. I purchased an Oximeter (that I learned about from the board) and have been checking my SATS and sometimes they are dropping into the 80s so I am going to see him again until I can find someone else.> > This is my first time posting . I 'm not comfortable with talking about myself, but i'm learning. I feel like everyone is already my friend. Sorry this is so long.> > Jo Ann UIP 2007> K Central Il Hubby ipf- 2006 As for me and my

house, we will serve the Lord 14

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.