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MemberJuly 27, 2021 at 11:19 pm in reply to: Ofev Users can Safely take Ofev on a Long Term Basis
Hello Everyone, I asked this question a couple of months ago but I never got an answer. I want to ask it one more time. Perhaps no answer is my answer. Anyway, has anyone ever gotten over IPF or greatly improved?
I am a Christian with a strong faith in God. A few months ago I was prayed for a at church service. Nothing spectacular happened but I started feeling better. I told my pulmonologist what I just told and ask him if he could give me another breathing test. He gave me one a few days later and the nurse said my test was better than the one I had last October but my doctor would talk to me. A few days later he told me the results. Here is what he said:
“Hi John: we have been measuring 2 things: 1. How much air can you breathe in and out and 2. How well do you exchange oxygen.
In October, your lung capacity was 3.16 liters. Now it is 3.58 liters. The measure of oxygen exchange has gone from 45 to 52%. There can be small differences with repeated measurements but not this much. Does this help?”
So, I’m interested if anyone has ever gotten over IPF. Thank you.
I have only been diagnosed with IPF for about a year. So far my symptoms have been mild. I am tired everyday and get winded easily. I am on Ofev. I wonder if others with this disease think like I do? I sometimes think I am making too big of a deal about it. I don’t tell everyone about it, mainly just my family and close friends. I wonder if I should just suck it up (sorry, bad choice of words) and maybe if I get in better shape it will go away. When reading this forum, I am always interested in people’s timeline concerning IPF. Like how long do folks go until they have to use supplemental oxygen, or have to give up things they used to do. I mainly wonder how long I have, before I start to experience these things. I am 73 and have found out that if I have a question about anything there are usually others with the same question.
I am not worried about my disease because I have a strong faith in God and know that my life is in His hands, I just wonder what my future here on earth will be.
Dear Vishal, so sorry for your loss of your Dad. I am praying for you and your family. If you follow this forum you will hear about different people with IPF or about their loved ones and then all of a sudden you stop hearing about them. Thank you for sharing his story with us. I’m sure most of us with IPF have thought how would it be when our time is up here on earth. Your father was surrounded with love right up to the end. What a wonderful way to pass from this world to the next. When you have IPF you have a lot of questions. Your father’s story helped us face reality a little easier. I am fortunate that I only have mild symptoms since I was diagnosed with this disease last June. Now that you are not caring for your father, lean on your family for support as you grieve your father’s death. Let them help you.
P.S. After thinking about what I just said about taking my Ofev as close to 12 hours apart as possible, my just be in my head. I may just be one of the fortunate ones that have very little side affects from the Ofev. It’s all a little confusing.
Great topic! I was diagnosed with IPF in July of 2020. I have been on Ofev for 2 1/2 months with very little side affects. I think the reason I have minimal side affects is that I take my pills as close to 12 hours apart as possible. When I was first diagnosed with IPF, I was pretty down after reading about the life span on the internet. But after reading comments from others on this forum, my outlook turned positive. I’m going to live as long as the good Lord wants me too. And I am going to live as good of a life as possible. I don’t take breathing for common anymore. I thank God everyday.
Are there any of you that have IPF using a CPAP machine when you sleep? If yes, does it help or hinder you? I have been using a CPAP for about two years now and in fact, I think that is what damaged my lungs. They (University of Washington) can’t find anything specific. They said I have chronic hypersensitivity pneumonitis. My pulmonologist diagnosed me with IPF. I had a blood test in Oct. and it came back saying I was allergic to several types of mold. I used to not clean my CPAP but once every two or three weeks. Now I have an electrical cleaning machine and I clean it every other day. I am on Ofev but not supplemental O2. My O2 level is around 93% at rest.
Hello, I have only been diagnosed with IPF since last June. So far I only have mild symptoms. I been taking Ofev for about two months. Can anyone tell me on average when do people with IPF have to start taking oxygen? My O2 level is about 93% at rest. This forum is very helpful but sometimes discouraging to hear how some others are doing.
Hello, my name is John and this is the first time I’ve said anything on this forum. I have only been diagnosed with IPF for about seven months. At first it was overwhelming and confusing. I am getting more educated with my disease and have come to terms with it. I am on Ofev and know that it can’t be cured but I am not going to let this thing control my life.
As far as New Years resolutions, I don’t really don’t know why but I don’t make them anymore. There are so many things that I cannot control, like my government, the hate in this world, my family and friends or even my little cul-de-sac where I live. I can however control how I react to everything. I put my faith in God and know that He has the last word.
Thank you for this forum. I have learned a lot and have been encouraged to go on.
Hello Mark, I read the articles that you referred to and am wondering if for those of us that have IPF should eat all the foods these articles recommend? All of the foods sound like a healthy diet for anyone but I’m new to IPF, only being diagnosed six months and don’t exactly which foods are good for me. Thank You, John