Cindy

You need to take control of your medical situation. Always get copy’s of reports like breathing tests and cat scans. Read the cat scan, a diagnosis can be made from the cat scan. Get a second opinion from a pulmonologist that specializes in PF. This disease sneaks up on you, doing fine for the day, week, month, year and then deterioration and then…[Read more]

Sorry you missed the heads up.  There are a lot of different forms of Pulmonary Fibrosis and most if not all forms gradually decrease the lung volume, in 2017 I was swimming and then could not get enough oxygen while snorkeling in area I normally snorkel and had snorkeled the previous 10 years and very near drown. Talking to another member who…[Read more]

Last I read Medicare requires the provider to supply oxygen for 5 years of oxygen but only pays for 3 years and then the supplier must supply the oxygen machine and supplies at their own cost. The 5 years starts over if their is still a need for oxygen and the recipient can change suppliers.  Sounds like Medicare does not have faith that we…[Read more]

I have a cousin who developed sarcoidosis, after changing jobs and stopping work with birds and being on prednisone his stabilized and went into remission.

As the ling disease progresses the need for oxygen increases and so do the effectiveness of the machines available. I have found the pulse machines wor fine at night, we still breath when we sleep so the machine detects the breath. As far as noise I have found running a 25 or 50 foot canula putting the machine in a different room with a closed or…[Read more]

Talking about vaccine’s, I got my second booster, which is my 4th covid vaccine. Here is US the 4th shot is approved for people with compromised immune systems. I was happy to see on Walgreens questionnaire they added lung disease for people with compromised immune systems. When I am out and about I use pulse oxygen that brings air into the…[Read more]

I ignore the ignorant and try to understand the different views, I do not engage with people who for one reason or another do not believe in the Science. Personally I had one of my tenants son die form Covid due to being unvaccinated and watched a serial person who posted about not getting vaccinated and they got covid, that seems to have quieted…[Read more]

My ear nose and throat doctor said to use the nasal spray with aloe, I have and it has eliminated my nose bleeds due to oxygen use.

My ear nose and throat doctor said to use the nasal spray with aloe, I have and it has eliminated my nose bleeds due to oxygen use.

I say no, first if the ct scan is read by a radioligist who specializes in lung disease the biopsy is usually not needed. A lung biopsy can turn into a thoracodomy ( a real nightmare ) when there is plural disease around the lungs not picked up on the ct scan. A world class lung doctor told me after the biopsy when reviewing my records that he…[Read more]

When I get a pft testit includes with and without albuterol, there is a small inprovement with albuterol on the test but in real time I do not feel the inprovement. If we look at the pft test it shows before and after.

Hello,  I take allacin, a form of garlic and a multi vitimin, so far so good, 5 years into this terrible disease.

It is not on the market in USA, it was first tested or developed at New Britton Connecticut and Yale medical dept. Over 2 years ago I posted in this forum under ” Sodium Pyruvate “.

Empthy corp did license it in China but I was not able to order any from China before covid came around. Their is some on going studys for covid useing this spray.…[Read more]

It is real easy to get the third shot, just walk into Walgreens or CVS or stop  into the grocery store, most ask some questions and some do not.  Immunity wears off at about 5 months. Watch the data from Israel, evan Fauci is impressed with the data. Good luck and belly up and get a shot.

I watch what is going on in Israel, they made a deal with Pfizer to share all their data, seems the immunity wears off at about 5 months so I got a booster, easy to do, just go to a drug store and answer some questions and they give you the booster.  I got real sick last month and thought I had covid but it was a upper raspatory infection and…[Read more]

I was told I would need a double lung and liver transplant 3 years ago and the hospital did not do double transplants, on top of that I can not take the medication ( ofev, etc ). I immediately looked at alternatives as my dlco was real low 10.6.  I checked the home for all environmental issues, mold, radon, feathers. I started alternative…[Read more]

I flew Ny to Paris.