Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Hi Annette, Welcome to Breathe Support. I'm sorry to hear of your diagnosis and I'm sorry that you had reason to come and look for a group like this but since you did I'm glad you found us. You are very very new to this diagnosis and I can imagine you have many questions. The most helpful thing you can do quickly is to read back in the archived messges of the group. There's a tremendous amount of information there. I wonder about your original asthma diagnosis. Given that you say no medication ever worked or helped do you think that diagosis is correct? Or do you think you've actually had pf all along? We have a couple of other members in Arizona...they've sought second opinions at National Jewish in Denver. There are experts in interstitial lung disease there who can help you get a more specific diagnosis than just pulmonary fibrosis. There are dozens of interstitial lung diseases that can cause pulmonary fibrosis. Some are more treatable than others. Be patient with yourself...don't jump to conclusions. Give it all time to sink in. We're all here to help! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Tuesday, August 18, 2009 5:10:26 PMSubject: New to the group 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 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/connective 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> Quote Link to comment Share on other sites More sharing options...
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