Laureen Aschenbrenner
Forum Replies Created
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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. ????