ida-anker
Forum Replies Created
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I was diagnosed with IPF in Oct 20, and started OFEV in jan 21. I believe the only reason why the doc reccomended OFEV over Esbriet was the number of pills daily (2 vrs 3) I think he mentioned early stage, however later on another doctor said moderate as my gas diffusion (DLCO) is at 44 % only, whilst lung capacity still 70 %. No side effects for the first 9 months except a lot of gas. Then the diarreha started. This is managable with Imodium. Last check up in Sept 21 showed no progression, looking fwd to next appointment in March. Sorry for any wrong spelling as English is not my native language. Stay safe.
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Hi all, maybe this is a Q to be posted elsewhere, but just curious about rules regarding being on the transplant list abroad. In Norway you are off the list after the age of 65, and in order to be ON the list you have to be so sick that expected life time is less than 2 yrs. Sees to be different from country to country.
BR Ida from Norway
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I started Ofev in January 21 after being diagnosed with IPF in October 20. I believe my cough has disappeared more or ledd, but the throat clearing is still there. Furthermore, dryness in the throat is also a typical symptom for me. I drink loads of water but it is still there. My next check up is schedulded to be April 19th, so a bit worried if the throat “thing” is a symptom of progression.
BR,
Ida
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Thanks for asking the question Pam, and for all uplifting comments. The 3-5 year is the first information you get after being diagnosed, both online and also all information from the hospital. It`s so scary so getting balanced information is very helpful. I try to keep a positive attitude, eat properly and work out as much as I can. This group helps a lot, so greatfull to be part of it. I understand that a protein rich diet is the best. Any experiences in terms of diets? Stay healthy and have a great w/e. Best regards, Ida
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Many thanks for admitting me to the Group. I was diagnosed With IPF in Oct 20. A chock after having trouble with breathing for approx 2-3 years. I’m 61 and located in Norway. I started on OFEV 150 mg a month ago, and have not experienced any side effects yet. First liver status was good aswell. After being in chock for a month I’ve been woriking hard on my thoughts and mental Health, forcing myself to find 3 good Things about life everyeday. Just the small Things such as a beautiful sunset, a Nice Music play or the fact thatI’m still Able to walk without any Heavy breathing. The problem only occurs in steep hills. I’m currently at 70 % lung capacity. Thanks for sharing all Your thoughts and excperiences – it is of great help. Sorry for any wrong spelling, it is a while ago I used English in my writing. Take care everyone
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Thank you Don for a wonderful, uplifting post. I especially liked the quote “be a blessing for other”. I will try to do the same, and will keep Your Words in my heart. God bless you. Best regards, Ida