john styles

Does not sound like you are getting correct advice, I would first have a lung transplant surgeon review the information you have which may not qualify you for their transplant,  a major transplant hospital would be prefered. I had a well known lung doctor specializing in lungs at a major hospital tell  me he would not of gotten the biopsy o…[Read more]

I also have the sneezing and then nose bleeds, my ENT doctor suggested Neli Med and make sure it had aloe in it, no more nose bleeds but still get some sneezing. He also told me to cut the cannela that goes into the nose back to take pressure of the area where nose bleeds can be started.

Saw PF on a x-ray reminded me when I was 10 years old and got home from school and my older brother who was 18 at the time was eating a late lunch of chicken noodle soup and reading a magazine. Hw asked me anything new at school and I said yes, we were doing drills for a nuclear weapons explosions and we get under our school desks, he showed me…[Read more]

Talk to your Pulmonologist, they can refer you, Matrix is out of plant city and is a provider.

Randy I wish I had your numbers when my lung issue was detected, you have a long time left. September 2016 my dlco was 16.09, that’s over 6 years, since then I did a lot of traveling.  Now not so much traveling.  I watch the dlco and to do that you have to the lung spirometry tests every 6 months. The 3 to 5 year is something someone averaged b…[Read more]

After much searching other oxygen users I found the best solution for me was a quarter inch clear fuel tubing found in plumbing and taking a razor and slicing the tube to 6 inch length and slicing it open then putting the oxygen hose in the tube and  putting the 1/4 hose clamp and attaching to my oxygen unit, works great and no more issues.

I have made lots of changes, I try to remember to bend my legs and not bend over.  This disease is so slow moving that 5 years ago I almost drown, did not realize that I had deteriorated. Scary.  Elevation effect me, I am at sea level but when I go to 3000 feet my oxygen saturation dropped 3 points.  I believe we have faith and take care of ou…[Read more]

Millie said above to re read the article because Zinc was taken with other 2 other additive’s and one not available. now I have been taking Zinc with the 2 additive’s and no improvement on breathing but blood pressure came down another 10 points. I will keep taking the above.

I am 6 years into this disease,  I call it the “stealth ” , because deterioration sneaks’ up on you.  When people ask how am I doing I tell them “good” they will say “really” and I say yes.  Cant see the reasoning for dragging out the details.  I try to stay positive and informed, and believing in God helps.  This web site is great for news arti…[Read more]

I will order and try it.

I will order and try it.

So much news on this website that sometimes these articles get by us, Thanks Linda for sharing.  It was published here under news. https://pulmonaryfibrosisnews.com/news/eperisone-muscle-relaxant-seen-to-safely-treat-ipf-in-mouse-model/#:~:text=Eperisone%20%E2%80%94%20an%20oral%20muscle%20relaxant,IPF)%2C%20a

Here is a easy page to read: https://pulmonaryfibrosisnews.com/news/eperisone-muscle-relaxant-seen-to-safely-treat-ipf-in-mouse-model/#:~:text=Eperisone%20%E2%80%94%20an%20oral%20muscle%20relaxant,IPF)%2C%20a

Looks like something we should look into, Thanks Linda.

I sleep elevated, I also use a pillow length then horizonal. Maybe the length {of my body} helps push the deteriorating lungs higher, I do not know but I do get a lot of relief, if I eat after dinner even a oatmeal cookie { high fat } I have more coughing but am able to reduce or eliminate it with a couple of puffs of albuterol.  If I am out of…[Read more]

Time to dust off my bottle of zinc. good article.

To laser or not to laser, huge question.  We are fortunate Andy hall brought the laser to everyone’s attention.  I personally think its more complicated then the ones who say it does not work and the people say that it helps. I think a lot of it depends on when you start the laser treatments, probably the sooner the better. Andy says his disease h…[Read more]

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]