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17 days in
I began the ofev journey 17 days ago. 100 mg twice a day. Nothing much to say. I feel somewhat off right after taking a dose, but can’t describe it. Doing pretty well considering how late I started taking it. My lung capacity is under 40 and I’m on high flow oxygen 24 hours. I didn’t want to take anything but a very special person asked me to try to hang around a bit longer. Here I am. I do OK. I’m fully functional if I take it slow. I’m having some beautiful mornings just now, the weather is perfect. I can walk and pull a tank short distances and enjoy my pets and nature. My special person still smiles so I think I am going to make another one. Thanks for taking the time to read this. I’ll post again soon.
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5 Replies
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I know your story M-14 . I was asked 15 years ago by my lovely (after my diagnosis) to stay around no matter what. I’ve done that. Every day on waking Its not been good for me, but my lovely is content. That’s very important is so important to keep me going. M. As I deteriorate ( lung function and bodily wise ) I get more help from the NHS . I do not recognise what the negative media says about it . Glad you’ve nice stuff in your life to keep you going. I haven’t , but that’s life sometimes. I have now been told that I will be offered Ofev soon, too. Can I ask you to keep us/me informed about how it is affecting you please. Nothing would be trivial. Everything is important M.
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I love you’re attitude. My lungs are at 43 so I’m not far behind you. Keep your friend smiling.
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Noticed you were pulling your tank. if funds allow a portable like Imogenis so much easier. I didnt shop around went with TV add . Best to shop around, compare prices and go with a company in your area . Also found the double battery was the best. Now i have 2 one single and one double . They are not continuous flow. Because we were traveling across country i opted to purchase a continuous flow . It has the ability for humidity . ( i use only distilled water no matter) YES, i do have $$$ tied up in this equipment!!but it allows me freedom . Being on O2 24/7 is so discouraging. There is a learning curve. MAKE SURE The FILTERS IN YOUR HOME ARE “”MERV “13 or higher and change them every month. Wash the filters on your machines weekly. Watch where you set your machines as they suck in the dust etc. . I order my tubbing on amazon …and am testing the “ noodle “ swimming apparatus on the 5o ft tubing ( even though they say ?? for 50 ft. Safety is paramount and no matter what length, it twist …. HOWEVER AS USUAL I VERRED OFF ….. lastly another blogger said he eats raisin bread for diarrhea‼️ worked for me too as well as pitted dated bc you have to EAT with ofev. Unfortunately i have also learned if you have IPF or such, more that likely you have other medical concerns. Learn to space your meds REMEMBER thyroid meds need 30 to 45 minutes on empty stomach. AM VITAMINS should not be taken with coffee, tea , .. ( google CENTRUM VITAMINS) heart medications such as Digoxin should not be taken with antacids….many of you have GERDS and if you are really going to fight this WHITES ….. bread, sugar, rice, fried foods, processed foods lunch meats feed your fat but don’t contribute optimal to your muscle . I miss my nightly glass of wine….. but sometimes just say HERE IS ONE FOR THE LIVER.OFEV IS ROUGH ON THE LIVER My INCREDIBLE PULMONOLOGIST Requires MONTHY liver check, IF YOU ARE THE TYPE sign up for the research The only way to cure this dreadful-disease is research. Stay safe, stay happy, continue to play!!! oh i sit and blow up a balloon every day . the big ones at the dollar store . 😊
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Wonderful to read this message! I’m glad to hear you’re adjusting to Ofev okay at 100mg. I know it’s not easy; however, we take the bad with the good and please to hear you are able to walk and enjoy the beautiful weather. It’s the small moments that make all the difference.
Charlene.
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I want to acknowledge those that responded to my post. I hear all of you. I feel all of you. I thank you. We aren’t alone in this. Tireless Charlene, always there with a kind heart. Sha, showing up to help me live better. My two friends living with our disease with strength and hope. It’s 5 a.m. on a Sunday. I’m not alone.
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