Mark Bowden
Forum Replies Created
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The best advice I every read was from the late Steve Jobs in a commencement speech he gave at Stanford in 2005, five years before he died of pancreatic cancer. Jobs says we should live each day as if it were our last day, as inevitably that (our last day) will be the case for all of us some day. It’s about attitude. Fix what you can and accept what you can’t. Most certainly, if you are a believer, then you know with confidence that God is with us each step of the way. With a chronic illness there are many struggles – physical, mental, physical, financial, and such. We must persevere. Enjoy each day and to the extent it is possible, be a blessing to others.
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@byronvogel
Hello, Byron – I recently was prescribedOfev and am also interested in foreign sources for this highly expensive medicine. I see online that an India pharmaceutical co. has its on version of nintedanib. I don’t know there is much difference in price. Still exploring. Meanwhile, what happened that you are no longer eligible for assistance? I am looking into assistance, but wonder what good that will do me if I’m cut off down the road. Any insight appreciated. Thank you, Mark B
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Hello, Pam and others – I have been blessed. When I was diagnosed in the spring of 1996 (25 years ago), I could not take more than a few steps without being breathless. I could not shower as the warm, moist air made it impossible to breathe. I coughed so much my throat was raw. I was prescribed a steroid. The pulmonologist gave me 6 months to a year to live; said my lungs were “filling up fibrosis.” I was very discouraged with my outlook, only compounded by suddenly facing family issues and upheaval in my job. The stress was incredible. I was encouraged to exercise, which was difficult. I pushed myself to bike and walk. I took breathing tests and image studies frequently, and persevered. This went on until 2012 when my pulmonologist retired and passed my case management to my primary care provider, who took image studies annually. Because I am a recent prostate cancer survivor, my PCP suggested I get a consult from a pulmonologist to establish a new baseline on my ILD. Consequently, I was prescribed OFEV, although I do not present common symptoms of the disease. He said the medicine can slow the disease, but he did not/ could not provide an estimated time of my demise. This caused me to do more fresh reading about ILD, and I found this Wonderful forum. Clearly, some of these diseases move incredibly fast, while others are slowpokes (that’s good). If a person who is newly diagnosed is able to exercise, I think this helps lung functionality, but I’m no medical professional so listen to you doc. Nothing can stop the disease. I’m 68 and am walking 3 miles a day. As for stress and anxiety, i have worked hard to manage theses things that weigh down my attitude. That said, Iam still dealing with the sticker shock spurred by the price of the prescription. I don’t know what God intends for me. I am grateful for every day.
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Hello, Mark K – any insight/ personal experience on when side effects of OFEV commence ? I am finishing my first week on 150 mg. I have read the literature, perhaps too much, as I am Very anxious about this medicine, coming off the starting blocks. Thank you. Mark B
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<p style=”text-align: left;”>Mark K — I have read many references to financial assistance in these forums. Some folks have just enough resources that don’t make them eligible for assistance, yet they somehow were able to get help. I’m looking for that pathway, if it’s real. I am semi-retired, on Medicare with medicare supplement and Medicare drug plans. I need to figure out what I must pay out of pocket annually to reach the catastrophic level, and then what my monthly copay will be. It’s all very unsettling. The doc says my lungs function at 70 percent.</p>
<p style=”text-align: left;”>>>>Finally, I apologize for talking about finances in this forum on on alleviating the winter blues. I know that attitude determines altitude. I’m grateful for each day — icy winter or humid summer.
Mark B</p> -
I am down in spirit right now but know this will pass. I am still trying to make sense of my most recent diagnosis, given I have lived with this condition for 25 years. At this time I do not experience any of the common symptoms, but the breathing test and image studies tell another story. I am in the shell shocked stage concerning the price of the medicine. I also am anxious about the side effects. I don’t know how to make this work. Is it ever too early to start Ofev if you have an IPF diagnosis?