Ron

Hi Charlene,
Its been awhile since I visited the forum. I’m still doing fine sans any treatment. Still taking the green tea extract (Teavigo) at half the dose used in the study (ie: only 300MG per day).

Back in December 2019 I ended up hospitalized with sepsis and pneumonia. Was sedated for 3 days, woke up with my three daughters from the east…[Read more]

Mike:

While I do not want to distract readers from the primary topic in this forum thread, I do feel I can offer some first hand experience regarding your question about altitude.

Up until January 2020 I lived at 7000 ft elevation in eastern Colorado. During my final days there I would become breathless climbing stairs. I often had to stop and…[Read more]

Charlene,

When I was first seen by a Kaiser pulmonologist who interned at National  Jewish and specializes in IPF he stated that there is for sure a link between GERD and IPF in many patients.  He stated while GERD can’t be considered THE cause, it is clearly one of several factors for many patients.

I have been treating GERD for several d…[Read more]

Cheryl:

According to my speech therapist you should definitely clear your throat when needed. Be thankful you are feeling the triggers to clear.

I am currentlly receiving therapy by the therapist to address a problem with recurring pneumonia.

I do not swallow properly which results in food getting into my windpipe. I also have the problem of…[Read more]

Charlene

Both Zertec and Flonase are OTC. Zertec is a pill. Flonase is a spray. Flonase is also prescribed. I found (two-three years ago) that I could pay less for the prescribed Flonase than buying it OTC.

Cindi:

You should contact the airline for guidance. Some planes have outlets, some do not. I took an American Airlines flight just last week. It was a domestic flight. Each seat had a pair of  USB outlets plus 115 vac outlets. It was an AA Airbus flight. Airlines order their planes equipped with various options. Not all Airbus planes will…[Read more]

A quick Google search of PPFE group brought up this Facebook group:

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&cad=rja&uact=8&ved=2ahUKEwjT6eqEjaDxAhWeFjQIHVQbArkQFjAJegQIAhAD&url=https%3A%2F%2Fwww.facebook.com%2FPleuroParenchymalFibroelastosisSupportGroup%2F&usg=AOvVaw2SdqBxM6G8cAgn5TM0YXzi

Hopefully the link works because I…[Read more]

Stuart,

I started taking Teavigo green tea extract soon after an article about the study appeared in the New England Journal of Medicine. That was around Feb-Mar of 2020. The study participants were taking 600MG daily. I am taking 300MG daily. My IPF as been stable. I had a CTscan and PFT in April. The CTscan showed no disease progress over the…[Read more]

from what I have learned, and what is somewhat confirmed by various poster here, it is rarely found to run in familys. I know there is no known lung disease of any kind in my parents, my grandparent or cousins. Likewise with my adult children.

No one in my family  has been tested for IPF because of my IPF. I have had IPF since 2007 and have yet…[Read more]

Based on what I have read here in the forums and what my own doctors have told me, the consensus seems to be that if the oxygen saturation measured with a pulse oximeter is in the 90%-100% range there is no need for oxygen supplication. Anything below that (my pulmonologist said 88%) then getting supplemental  O2 is advised.  However, there are v…[Read more]

I should think you would have no problem if you signed up for the vaccine at a facility (hospital, clinic, etc.) where you have been treated for IPF or any other condition where your IPF would have been noted in your medical record. If you have IPF you are at high risk if you contract Covid 19.

I am in the US. I served in the Navy for four years…[Read more]

I feel I am coping well. However, it was not always that way.

I was diagnosed with IPF Way back in 2007. At that time very limited reference was found on the internet, but all of it was bad. Life expectancy was in the 2-5 year range. The pathologist report accompanying my first CTscan indicated it appeared to be old, inactive scarring.  For the…[Read more]

Thanks Pete,

Yes, apparently the earlier post was deleted causing a disconnect with yours. I did misunderstand. Thanks for the clarification.

Fluticasone propionate, sold under the brand names Flovent and Flonase among others, is a steroid medication. It is available as a retail over-the-counter product. I found it is cheaper by prescription unless you have to pay your doctor $100 in order to see him and get a prescription. Other brands, including Equate are also available. Check the…[Read more]

Keeping hydrated is certainly a good thing but doubt it has more than a minimal effect on keeping your nasal passages moist.

Humidity probably plays the biggest part in keeping them moist. Also, altitude could play a part. When I moved from near sea level in Maryland to 6500 and later 7000 ft elevation in eastern Colorado in 1990 I suffered…[Read more]

Pete Besio:

I don’t think anyone here has fallen for a “miracle cure” pitch. We were actually astonished that such a small study made it into the prestigious New England Journal of Medicine. I think the reason it did appear there is that it was conducted by a legitimate group, involved serious metrics, and had such good results. It is my hope…[Read more]

Hello William,

I will try to answer your query and a few others in subsequent posts to yours.

I am 80 years old, a widower, and live in Boise, Idaho. I moved here from Colorado in January 2020. Am a veteran and never used VA health services. On Medicare Advantage insurance. Diagnosed IPF in 2007. Followed up for 3 years until 2010 with CT…[Read more]

Need help paying for Esbriet (pirfenidone) or Ofev (nintedanib)? Consider contacting Healthwell Foundation http://www.healthwellfoundation.org. Perhaps you are like me. My Social Security payout disqualified me for any state or federal assistance. If your insurance plan (Medicare, private insurance, etc.) doesn’t cover all of your drug costs then…[Read more]

James,

You are so lucky to have the desire and talent to play the dobro and enjoy playing others. I lost my sense of rhythm due to a stroke before I was able to learn an instrument but I definitely enjoy listening and dobro or resonator are my favorites to listen to. They really add “color” to the sound of a band.

I can say that music is what…[Read more]