Not actually a COPD patient but, IPF
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Thanks for the prayers. For me, the frustration was the constant coughing that led to the diagnosis of IPF. A a person of faith, the my future well-being is not dependent upon a cure because, there is a common condition faced by all and that is the grave. Anyone who has ever owned a cor, washing machine, or lawn mower, etc. knows they do finally wear out. So too, this biologic machine we call our bodies wears out and eventually we won't have it to walk about in. I find it somewhat paradoxical that, on the one hand persons who profess faith in The Christ are consumed with preserving their lives while on the other hand are hoping to be clothed upon with that garment that won't wear out. For me, it's about the quality of life, not length. Most everyone knows they won't live this life forever but have not come to grips with the issue of their eternal quality of life – so to speak. In this life, I have been really blessed, in that I have very healthy and have not been particularly impaired by anything until now. And actually, am not now really that impaired. I suppose when it comes to health and quality of life, I've spoiled. So, now I complain because I can't pretend I'm still 30. We are called to bare His cross daily but, I haven't been able to match IPF to Cross Bearing. If you are a person of faith as your response suggests, I hope your quality of life improves until you are called home. That is what I hope for myself. Finally, for me, the issue isn't death, it's dying. I explain it to my friends this way. I hate to fly (really really uncomfortable with the very idea of getting on a plane). I want love to go to Hawaii. Aye, there's the rub – can't get to Hawaii without getting on that plane. (Rapture not withstanding). Have a great day, and God give you the strength you need for today.
Has any provider mentioned IPF. I am an IPF patient. Basically, my lungs will become dysfunctional due to scar tissue forming for "unknown" reasons. My pulmonologist has put me on a KETO diet which is believed to be beneficial for te immune system. On a positive note, in addition, I was diagnosed as a pre-diabetic. Why is that a positive note? As it turns out, there is evidence that a very old and inexpensive medication used to treat diabetics, and pre diabetics, reversed tissue damage in IPF patients. So, my doctor has prescribed Metformin for my pre-diabetes with a hope that I too will see some positive improvements in blood sugar and breathing capacity. A diagnosis of IPF, is still considered a death sentence with a survival rate of 3 to 5 years. Maybe it is a path you can take as well.
I have a lug issue as well. Diagnosed with IPF a year ago, I can understand how scary it is to hear the diagnosis for the first time. IPF is incurable. The folks at MAYO were helpful but, were only able to confirm what my regular provider said. After receiving the news, I went on line to see what the rest of the world had to say. I think you will have to take some time to come to terms with your condition. Like me, you have some options available and should take advantage of any resources you can find. I have found research is being done in all sorts of places, and some with promising results. Regardless, I had to come to terms with the current state of things. I hope you do well in your journey.
Yes, I have IPF as well. My Pulmonologist discussed OFEV with me and given the restrictive cost and the fact it is not a cure but a means to slow the disease's progression, and that it has some pretty lousy side effects, I opted out.
I was diagnosed in 2018. Like Larry (2012) I packed up my statin prescription because of what I read about the possible connection between statins and IPF. No change in my life style since then and, while not a clinical determination, I feel no worse than I did before. Now, Dr. wants me back on statins because of increased cholesterol issues. We'll see how that goes. The big question is, which one will get me first – failing lungs or clogged arteries?
As mentioned, I have been reading a lot about my IPF. Recently, I came across some interesting research done by the University of Alabama, Birmingham describing a reversal of IPF in a patient taking Metformin, an "ancient" drug used to control blood sugar. This may sound funny but, I'm glad I was also recently diagnosed with Prediabetes because, I am now on Metformin. So, time will tell. Based on statistics given on several sites, I am among the cohort with the least time, as I am over 70. I am now 12 months post diagnosis and the average is 14 months for folks my age. If I remember, and am able, I will update on my progress, particularly with respect to any Metformin related stuff.
I am still moving snow, and have an active life but, I believe I owe my continued strength to my Creator and prayers of my fellow Christians. With regard to using medicines, as Jesus said, "Be it unto you according to your faith".