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How quickly can pulmonary fibrosis progress?
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Hi charlene :
I am caregiver for my wife that still asymptotic. She still do not want to start medication till next lft. So far the only thing she had helped a lot is a bit of walking, keeping a healthy weight, doing weight lifting 2 times a week, that has helped a lot. Having strong legs and core muscles, provides many benefits. She sleeps fine and now, a lot better since she started with haritaki pill about a month ago. She also drink a lot of water and have humidifier in every room she is.
There supposed to be a lot of medication coming out , we do not know when.
Alex
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That’s great to hear about your wife @Alex Marion ! You are absolutely right; maintaining a healthy weight, inflammatory-reducing diet and exercising to the best of our ability is really important while living with IPF. I’m glad to hear your wife has managed to stay off medications to date, the side effects can be terrible so I am pleased for her. Best wishes!
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Thank you Charlene, and thanks for this forum where I had learned many different options on how to deal with this condition.
People like Steven Drago, Lee, Kim , etc had provided great information .
I also found that everyone has different outcomes and not always is 3 to 5 years, on fact, is more important to avoid irritants on daily bases maintaining a good lung helth.
Lee is one of the best examples in how maintaining a good exercise rutine changes your quality of life. My wife had a 9% improvement in 6 months with excersize regime, good sleep, and stress control. All are keys to keep the progression at bay, even the pulmonologist do not recomend to start medication till necessary, maybe a mistake, but they know better, as she still totally asymptotic.
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I was diagnosed in May 2021 and have been on 150 does of Ofev twice a day since with all of the diarrhea problems. I have been fine and able to play golf 2-3 times a week, riding in a golf cart. I just started noticing I was a little out of breath on the practice tee warming up last week and then about 3 days later, just like you flipped on a light switch I couldn’t walk 20 feet without running out of breath and it seems to be getting worse every day. Has anyone else experienced this?
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That’s how mine started BEFORE diagnosis. Couldn’t make it 10 feet without being out of breath. Are you on oxygen or have been? The oxygen got me back to a good state and then I started weening myself off and have been for about a month. I always have it nearby just in case. I could play golf if I wanted but the practice range would make me have my portable handy for rest in between.
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My husband, Roger, was diagnosed in Spring 2022 with ILD. After an excellent extensive workup, they were not able to get a more specific diagnosis. His MD started him on Cellcept, an immune suppressant, with the hope of stopping the inflammatory process. He did not have extensive fibrosis. His ILD was stable and not progressing on the meds. We had hoped that he would do well for a significant period of time. However, he had an unrelated medical situation in March 2023 that required immediate laparoscopic surgery. He did well with the surgery, but a few days later, he developed an infection, became septic and died 7 weeks later. His hospital care was excellent. They did everything they could, but they could not stop the infection and inflammatory process. Because he was immunocompromised he was not able to fend off the infection. In 2022 at the time he was started on the medications, he was given the choice of an immune suppressant, an antifibrotic, or monitoring with wait and see what developed. He chose the immune suppressant. Looking back now, I wonder whether he made the best choice. Just some thoughts about choices we have to make and risks we take. He was extremely well educated and very knowledgable about his medical condition. Just bad luck and very sad for all of us. Mary Spence
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Hello Jayme!
I was diagnosed in 2022 with IPF and I tried taking the OFEV that the doctor prescribed for me – it was a horrible experience! My blood pressure got so high that I almost passed out! I decided not to take it anymore! I started doing research on cures for diseases and came across the carnivore diet! Many people have reversed their diabetes, auto immune diseases, depression, even dementia, so I decided to try it! So far I’ve lost 35 pounds and I’m feeling great! I started exercising and I’m getting in better shape! Sometimes I’m a little short of breath but I think I am doing much better than I have been in a long while! I’m not on any medication except for blood pressure and thyroid medicine, but I hope to get off of those real soon! I hope others will try this carnivore diet and see if they feel better! I don’t think doctors know much about this, but you can find a lot of information on YouTube. You can look up Dr. Ken Berry, Dr. Anthony Chaffee, Dr. Robert Kiltz, Dr. Cywes, Dr. Elizabeth Bright, Dr. Tony Hampton and Dr. Phillip Ovadia just to name a few! There are many more carnivore doctors out there!
Good luck on your research and God bless you both!
Maria Donihoo
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I am currently 80 years old and was diagnosed with IPF in June of 2018. The affliction had probably been with me for one or two years before that. I went on supplemental oxygen in late 2019 at a rate of 3 liters per minute. I could still play golf with a portable O2 concentrator up until the end of 2020. My supplemental O2 needs became greater over time especially under any exertion. Now in May of 2024, I am at 6 liters on my home unit. Yes, it is progressive, although I have lasted longer than my initial prognosis. I under-go an exercise routine two days a week for about two hours. During that routine I am hooked up to an O2 tank at 10 liters per minute because of the exertion. Hope this helps.
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