Pulmonary Fibrosis and ILD Treatment Options
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- Опубликовано: 5 сен 2024
- In this video Dr. Meena Kalluri discusses treatment options for Pulmonary Fibrosis and Interstitial Lung Diseases. Dr. Meena Kalluri is an interstitial lung diseases and pulmonary fibrosis expert. Dr. Kalluri is the founder and director of the Multidisciplinary Collaborative Interstitial Lung Diseases (ILD) Clinic at the University of Alberta.
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 .
Excellent video. Very interesting, informative and worthwhile video.
Thanks Dr. Scleraderma patient.. Blessings to you..
Thank you so much for informative video. 🙏
Thank you so much for your video it will benefit me so much in the future Donald L. Breland
awesome video. thank you.
Very useful
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 .
Thanks so much best info I’ve gotten my husband 77. over hours and hours of research. We can’t see specialists for 8 weeks after diagnosis ipf with honeycomb and nodules. Not sure of all that meaning . He’s doing ok not able To do much activity. Wixela is the meds he’s on. 8 weeks along to wait for air. He has to go to va hospital. I ask his gp dr is that time appropriate she said yes he’s had a long time. This sickness sounds terminal 😞 I ask his dr. She said idk we must wait for specialist. Thanks so much. Hopefully we can maybe be o2 on board so wait time won’t be so long. Thank you .
Plz tell me about that my mother suffering 😭 cough not stop tell about how u control cough
@@aqsakanwal6544give your mom wheatgrass juice. You'd have to buy a wheatgrass juicer and buy the grass and just juice it. Take an ounce a day and gradually have her work her way up. The most u can take in a day is 4oz. What wheatgrass does is that it dissolves scar tissue from the lungs, which is the fibrous tissue that makes your lungs not be able to expand, the way they should, when u breathe in. Doctors and hospitals are useless, when dealing with a chronic disease. They will just tell u there is no cure, but still keep u entertained, just so they can soak every last penny out of your insurance. Drinking the wheatgrass juice daily is important, to see the benefits.
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.
My mom is very sick and can't get an appointment for 6 months. Any suggestions of what we can do here in Texas while we wait?
Is bilateral apical fibrotic scarring serious
Hello mam
I m ILD present my age 34 years please help me 😢
Serrapeptase? 🤔
Is ILD contagious?
No
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 RUclips for your medication.
Hi ,please let me know how to reduce ur fibrosis please help me .
Which treatment helped to your fibrosis
@@chamud3722 Dr Ogudugu treatment
@@chamud3722 just a scammer there is no cure!!!
@@polaris7122any treatment is their?