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You have forgotten Vicore Pharmas molecule C21 that has some very promising data from their 2a study (actually increasing the lung capacity) at 24 and 36 weeks, that just entered a larger 2b study - in addition the medicine have shown very small side-effects
Have you ever used a pendant canulla? I do not use masks. I’m on 9 liters with a regular canulla at home but have gone down to 8 in two weeks on the pendant.
I never expected i would be free from pulmonary fibrosis so soon with a try of natural roots & herbal extract dr osuma is very helpful in such cases hurry up and check him out on his channel Dr osuma !!!
IPF Warriors! I'm 4yrs into my disease. I am pioneering a move into exploring better holistic approaches and I personally have been able to move off my Ofev and other pharmaceutical medications. Follow my journey, see my progress. I WILL NOT SURRENDER TO THIS DISEASE!
As ILD's progress, supplemental o2 goes from making life easier to prolonging the inevitable. In the early stages, it's a wonderful thing. From an IPF patient, best wishes to all who are suffering.
This was very informative. An I’ve learned a few more things from you.keep striving to get the most out of life we can, jus a lil differently! Thankyou
IPF patient already beyond the expected departure date. I tried a dozen different meds to help with the coughing fits, which have been the worst problem for me up to the last couple months. None were magical cures. I had an acute exacerbation last month, which caused a huge drop in ability to get around. Walking slowly to get 50' causes a big reduction in o2, but thankfully supplemental o2 helps with that. Currently using 4lpm most of the time. I was on Ofev for 7 months, via a grant, but when that ran out I had to stop. There's no way I could pay for that medication. I found it helped with the cough, but the side effects did show up about a month in. Combine that with Crohns disease and it was quite difficult to live a "normal" life. 2 visits ago, to see my pulmonologist, he walked into the exam room and the first thing out of his mouth was "You're still alive?" The last visit, in January 2024, the last thing he said was "That's what's going to kill you.", speaking of the coughing fits. He and my GP wait until the end of my exam to have me take deep breaths so they can listen to my lungs. That ALWAYS causes coughing fits that can last anywhere from 5 to 10 minutes straight. It's always funny when they ask "Do you need a drink of water?", because the cough is from deep inside the lungs, not something caught in my throat. Drinking liquids isn't going to help the lungs, and probably the last thing you want to do in that case. My o2 drops into the high 70's to low 80's almost every night when I fluff my blankets and get into bed. That's without the supplemental o2. My lowest o2 readings have hit the low 70's a few times, and those times are terrifying. With supplemental o2 I do much better, and I make sure to take my time in everything that I do now. The same thing happens getting dressed or getting out of a shower. This is the norm, and it sucks. Regarding the portable o2 concentrators, she's 100% correct. The Inogen One G5 has settings that go from 1 to 6, but those are NOT the LPM that it provides. Those are just numbers that the manufacturer uses to show you where you have the unit running. On the lowest setting, it puts out .21 LPM. That's less than a 1/4 of a liter per minute. At its highest setting, it puts out 1.26 LPM. These are pulse dose units and do NOT put out constant flow. There is a major difference between pulse and constant flow. These units are good for freeing you from the house and your big o2 concentrator, but you should realize that you will have to slow down and pay constant attention to your activities and o2 levels. Bottled o2 is more versatile, and can come with regulators that can be switched from pulse to constant flow. Those, especially the large bottles, are probably a better investment, but are not as easily moved or carried, depending on size, and if you to fly, you can't take them on an airplane with you. The portable o2 concentrators can be taken on flights, with prior notification and some rules you must follow. Lung transplants are an option, but only about 1% of lung patients will actually get one, and the life expectancy afterward is about ten years. You also have to take anti-rejection meds for the rest of your life... LOTS of pills every day for the rest of your life.
The doctors are insensitive. Try taking vitamin a for your coughing . When you cough incessantly, it can mean that you are deficient in vitamin a . Vitamin a helps your goblet cells form mucus to protect the lining of your lung epithelial cells and protects them from irritation from dust , viruses , bacteria , fungus . Most people who have copd or emphysema are deficient in vitamin a . Walmart has a vitamin a supplement that has 2400 mcg per capsule of retinyl palmatate . Try taking 1 capsule per day with a meal that has oil or fat . Vitamin a needs fat to be absorbed . Vitamin a will also help repair your bronchiole tubes and alveoli. With this vitamin a , also take 2000 iu of vitamin d . This vitamin will also help stop lung infections and slow the destruction of alveoli and lung tissue by slowing metalloproteinase enzymes . This vitamin should also be eaten with a meal that has oil or fat. Vitamin d is also deficient in people who have copd and emphysema .
Wow i need a transplant I'm try to get valves bad emphysema at the point of no return either valves reduction surgery or coil life stinks i do nothing but worry when my times up doon
I wish they could just develop a machine that could breath for people long term. I mean even if you had limited mobility it would be a great invention.
Watched and listened. I'm also 24/7 on oxygen due to Covid in 2021. I'm still adjusting. There's so many things I learned. Got a unit at home and a portable unit when leaving the home. Yes I'm a bit slower but I also get there. I listen to the Doctor take my medication and live and enjoy each day
Tears of joy bear each others burdens merry christmas i would love to rub elbowes with you i would love to rub your elbowes god can do eney thing but fail
hi my left lungs fibrosis scaring left base mediastinum does notrevel any maas, pull or shift. left diaphragmtic hump. no bony or soft tissue abnomality detected is this normal how to improve this pls help sir for my medical report for job.
Thank you great info. My husband has ipf diagnosis april 2022 was on ofev 4 months had to stop taking Idky. Dr said don’t take anymore til he says 🤷♀️ my husband very cold feet very dry ghost white skin but still getting around some he’s 77. I know there is no reply on these post and most comments get deleted. I’m just saying for others who may be looking for answers or have answers. His liver numbers were up 1.7 but back at 1.3 now
Ma’am, is there any Intravenous drug administered in MCTD - ILD (chronic fibrotic ILD - typical UIP pattern ) with severe PAH ? My father aged 48 was administered with an IV drug for about almost 5 hrs & doctors asked him to do it once in every month for 6 months . Could you please explain it ma’am? Please don’t ignore this Question ma’am😢 I’m a MBBS 5th yr student & I was not at the hospital when he was admitted . I wanna know more about it .
Herbal medicine has proven to me that natural herbs and roots are blessing from God because my progressive COPD was cure with a herbal medicine from Dr Madida I come across on RU-vid.
At this point i'm still very shocked with the negative result I got after suffering from pulmonary fibrosis for so long. Thanks once again Dr. Ogudugu on RU-vid for your medication
At this point i'm still very shocked with the negative result I got after suffering from pulmonary fibrosis for so long. Thanks once again Dr Ogudugu on RU-vid for your medication.
