I’ve had similar issues with breathlessness and coughing at the dentist, especially when lying back in the chair for longer periods. It helped a lot when I explained my situation to the dental team and asked for more upright positioning and slower, shorter sessions. We took breaks when I felt short of breath, and that really took the pressure…

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Has this been tried by any teenagers or young adults? Is it intended to slow fibrosis?

TRANSLATION

Folks, I know that all of us who are ill look for anything that might offer even a glimmer of hope for life. But let’s not take risks or go looking on our own for miracle cures that simply don’t exist. We need to trust qualified doctors, their knowledge, and their desire to help. No DIY herbal remedies, lasers, or other gimmicks.… Read more

<font dir=”auto” style=”vertical-align: inherit;”><font dir=”auto” style=”vertical-align: inherit;”>Ludzie, wiem, że każdy z nas chorych szuka wszystkiego co być może da chociaż cień szansy na życie. Ale nie ryzykujmy i na własną rękę nie szukajmy cudownych lekarstw których nie ma. Musimy wierzyć w dyplomowanych lekarzy, ich wiedzę i chęć… Read more

Continue to push yourself. Walking was the best self-care I did, and it helped me tremendously during the transplant phase of my journey. You are doing the hard part now.

Sam…

The year is half over and so far I’ve walked four days for 23 out of 26 weeks. An injury in early June was responsible for one missed week, but the other missed weeks were just me not being diligent enough. Now I have to do 26 week for the next half of the year.

Anyone here complete the trial yet or know when they plan to end and release results? I’ve been using the Tru Niagen/zinc combo for about 7 months now, but haven’t seen any improvement.

Hi WildBill,

I will post this here; however, it is not an endorsement of laser therapy. If you have IPF, please carefully read Andy Hall’s disclaimer that it is not a cure or a treatment. I also advise you to consult with your care team to determine if it is the right treatment for you.

https://summit-chiropractic.com/ipf/

I intend to start therapy soon after reading all the favorable posts.

I have located a Chiropractor who has a Summus class 4 Laser.

Can someone let me know what Dr. Hall’s protocol is for the laser treatments?

I know I am late to this conversation. I went out to research the device she recommends, and I urge you to be cautious. Understanding she is a Naturalist, please consult your pulmonologist if you have not done this (even if you have). The device is essentially a humidifier, and adding humidity at this level could be damaging. It is not…

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Hi Camila,

Palliative care is covered by Medicare based on the order written by your doctor. That may be the best place to start to understand what your doctor has ordered. They can also advise whether curative therapies, such as pirfenidone, are supported.

Can you come back and let the group know what you learned?

Sam…

I was diagnosed in 2022, and since then, I have been using Perfenidone. I didn’t have symptoms at all for the first 3 years, which confused the doctors. I had an exacerbation in December and ended up in the hospital. Now I am 24/7 on O2, 2 L. Any movement gives me extreme fatigue and coughing. In June, my doctor recommended hospice. …

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Writing a weekly column at Pulmonary Fibrosis News and moderating PF Forums does keep me busy. If you have pictured me writing from a cubicle farm, let me help adjust your vision.

I write from everywhere. I have written from ships, from a vacation rental at the beach, and from my home at Lake Anna in central Virginia.

Since June 22, I have…

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Yes

I will ll suggest to my pulmonologist. i am now on Ofev 100 mg and newly added is Jasycad. This combination is causing extreme diarrhea , Nauseousness and the inability to eat. The doctor says just give a few months, but I feel like I’m losing weight day after today and I don’t know what the solution could be. Any suggestions would help me thank you.

I would like to join the Research and Development group.

Update on flying to Alaska in May. I took the advice of my pulmonologist and lung transplant doctor concerning flying after a single lung transplant 4 years ago. I flew from BWI to SeaTac to Fairbanks with out any supplemental oxygen concentrator and had no problems with oxygen levels dropping. I was extremely exhausted though following the…

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Please add me to your forum

Norm

Hi, I’m 84 and was diagnosed 2013 with IPF. I’m currently on 5-6 ltrs of oxygen and up to 7 if doing a lot of activity. I’ve never seen anyone else diagnosed as long ago as I was so it’s nice to meet you.

Can you walk around or need a wheel chair or rider? Do you feel well, sleep ok. I can’t walk very far but can stay active in my home and…

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For any group you are interested in, you can click the request access feature or send me a note here with the name of the group you want to join. I will send you an invite to the group.

Sam…

yes