Laureen
Forum Replies Created
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Can I ask a question? What benefit are you getting from edibles? I’m just curious. I’m not a fan of the way they make me feel, I get anxiety really bad, and that’s only eating half an edible. I have been on several medication combinations and now am on Ofev, for about 9 years now. About a year ago I had to go from 150 mg 2x day to just once a day. I thought maybe the edibles would reduce the nausea. I was actually diagnosed in 2002, and have been very fortunate it has progressed very slowly.
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From my 1st appt for a persistent dry cough, having xrays done (ordered by a nurse practioner), diagnosed with pneumonia, given antibiotics, going back, having my PCP look at the xrays, know it wasn’t pneumonia, immediately sent me to a pulmonologist. Was given a walking test and scheduled for a bronchoscopy and diagnosed with IPF. That doctor then referred me to a doctor at the UW Medical Center who specializes in research and treatment of this disease. More tests then an open lung biopsy confirmed the IPF. From start to finish, it was probably 4 to 5 months. Mostly for scheduling appointments, but only about 3 weeks for a doctor knowing what it was.
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Yes, find a new pulminologist! I see Dr. Ganesh Raghu at the University of Washington. He is internationally known for his research and treatment of IPF. I know there are different forms of the disease. If you can’t travel to the UW, I would see if you could call and see if they could recommend one in your area.
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I was diagnosed almost 22 years ago, still not on oxygen. I was told 4 to 5 year life expectation from diagnosis. I was getting worse, then when Ofev became available, things started improving. Side effects can be difficult at times. I truly believe faith and attitude has been a huge factor in my survival. I made goals for myself, turning 50, 60, 65, becoming a grandmother. There are days that are worse then other days by far. It takes me way longer to accomplish chores, I have to stop and rest often. BUT, I never gave up living, I never gave up.
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I take Ofev, and do so by a grant that I applied for. My supplemental insurance to Medicare does cover the bulk of the cost, and the grant pays for the balance. Talk with your care team and find out if they can help you with how to get started with the process. I am away from home right now so don’t have information at my fingertips.
I have been taking the drug for about 6 years now, and it has made a difference, I think so anyway. I was diagnosed in 2002, have rough days, but ultimately I am doing very well. Not on oxygen at all yet.
Good luck to you.
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I was diagnosed with basically the same information. I am happy to say, I am on year 20. I know I’m not the norm. The first year was the roughest, but mostly getting the medd to a tolerable level. I’m a firm believer in positive attitude, I had young children, and was basically told I wouldn’t be around to watch them graduate. My doctor had me set goals. Live to 50, watch my children graduate, turn 60, turn 65, become a grandmother. I’ve met all my goals, and still going strong.
I have not let this disease define me or stop me from living the best life I can. There are tough days, but I just regroup, and keep going.
About 6 years ago I started taking Ofev, it allowed me to go off other medications, I deal with the side affects the best I can, but I seriously feel better than I have in the previous years. Hang in there, make goals, keep moving.
Good luck to you. ????