Sunday, Memorial Day Weekend
May 27, 2008 12:13pm
I did get that holiday cook out done and helped straighten up the back porch, cleaned up the playground for the children and made all new recipes for …
JanO 
12:15pm, May 28, 2009
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About Me
JanO
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About Me
I have Pulmonary Fibrosis and have been diagnosed since 2002. My husband and I lead a PF Support Group in our area. I am also on the Board of the Pulmonary Fibrosis Association of Texas, a non-profit company. Our passion is other PF patients and raising awareness of this disease....I credit my family, my friends and my God for helping me to still be here today. Every day is one more that we can help someone else:)
I have Pulmonary Fibrosis and have been diagnosed since 2002. My husband and I lead a PF Support Group in our area. I am also on the Board of the Pulmonary Fibrosis Association of Texas, a non-profit company. Our passion is other PF patients and raising awareness of this disease....I credit my family, my friends and my God for helping me to still be here today. Every day is one more that we can help someone else:)
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Interests
People; PF; sitting by the lakes or the beach; gardening; our children and grandchildren; annual trip to Yellowstone National Park!!!
People; PF; sitting by the lakes or the beach; gardening; our children and grandchildren; annual trip
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Recent Activity
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Journal
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Catch it early!
May 25, 2008 9:48am
After going to my doctor he suggested not starting antibiotics until I have more fever, or start coughing a lot more than I …
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Doctor Appointments !!
May 21, 2008 11:46am
I almost believed that I would get away with no infections this month....May is almost over then my lungs have slowly increased in discomfort over …
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Pulmonary Fibrosis and Patient Needs
May 20, 2008 8:42pm
I was diagnosed with Pulmonary Fibrosis on April 2, 2002. Yes, it is one of those events that make you remember exactly where you were and …
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Hugbook
Kiss
You are too kind.
Hug
Hello I was just diagnosed with pulminary fibrosis and I am also very scared. I hope you get to feeling better soon. All we can do is live one day at a time and live it to its fulliest.
Hug
Thanks for the hug. I am so confused and scared. I have an appointment tomorrow with my primary and will insist on a new xray and CT, then to a pulmonoligist. I have been having a pretty hard time since sunday, can barely talk on the phone, hard to eat and my pulse is getting to 140+ whenever I stand up. My xray last january said "pleural thickening and bilat upper lobe minimal fibrosis. At the time I was refered to a new rheumatologist due to ANA+ and Sjogren's +. Since then we ignored the lung part. I have had SOB for several years, but bad lately. I am a nurse casemanager and I am stubborn, but am afraid of the probible answers. I also am positive for Multiple Myeloma cells in my bone marrow, no chemo yet. THIS BITES! THanks for the EAR Julie
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Hug
Thanks for the hug. I am so confused and scared. I have an appointment tomorrow with my primary and will insist on a new xray and CT, then to a pulmonoligist. I have been having a pretty hard time since sunday, can barely talk on the phone, hard to eat and my pulse is getting to 140+ whenever I stand up. My xray last january said "pleural thickening and bilat upper lobe minimal fibrosis. At the time I was refered to a new rheumatologist due to ANA+ and Sjogren's +. Since then we ignored the lung part. I have had SOB for several years, but bad lately. I am a nurse casemanager and I am stubborn, but am afraid of the probible answers. I also am positive for Multiple Myeloma cells in my bone marrow, no chemo yet.
Hug
Keep up the good work.
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Photos
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Support Groups
Close Pulmonary Fibrosis
Treatments
- Cellcept Somewhat Helpful
- then recently PFTs dropped again.
- Cyclophosphamide Not Working
- I had nausea all the time;my blood count bottomed out;it made me very very sick and didn't help my disease at all. I had to quit after three months.
- MucoMyst Working / Worked
- Hate it..awful taste, don't want to use it again...Musinex otc helps me too.
- Pirfenidone Considering
- but the doctors say I don't fall within the protocols so can't get it.
- Prednisone Too Soon to Tell
- Just put back on this drug at 60mg. Not sleeping and alot of joint pain
- Remicade Not Working
Close Degenerative Joint Disease
I have a few autoimmune diseases such as Pulmonary Fibrosis, Crohns Disease and RA. I have been disabled since April 2002 when I was dx with PF. The joint pain is so bad and I just last week had my Pred increased to 60mg. Since then the pain has gotten so much worse, I don't remember it causing pain before only covering it up...anyone else experienced this?
