The green tea farse, or at least that is what I call it. After reading the news release on green tea I bought several bottle’s and started taking the supplement.  Then I thought I would look into the study. The study was done at prestigious california university and then I thought I would read the study. There it was at the end of the study,… Read more

Having UIP and cirrhosis made me ineligible for a lung transplant, I was told I would need liver and lung transplant, a double and survival rate is 50%. My cirrhosis was from Hep C that was cured 6 years before being cured of Hep C. I could not take the medication available.  People will tell you they have had IPF for 20 years or 10 years,… Read more

Hi Steve, what supplements are you taking?

Interesting.  I went to center for excellence, a transplant center. They did the 6 minute walk test and put me on 10 liters walking and 8 liters sitting.  2 weeks later I collapsed and the critical care lung doctor at a different hospital used a bypass mask ( not a cpap ) and reduced my elevated carbon dioxide back to normal, seems the pursed… Read more

For me the pft tests diagnosed my progression. I would get two per year and you can see the rate of your decline. Some people will tell you they have had it 20, 10, 5 years etc.  How much lung capacity did you have when diagnosed and how do you have now will give you your rate of decline.  Seven years ago I had 50% when diagnosed. I suspect I… Read more

I do pft tests to track  progressing.  How long you have really depends on your pft test. Some people will say they had it 10 years, some 2 years, etc,  It depends on how much lung function you had when detected. I had 50% and noticed when I breathed in it felt like I was in a Smokey environment.  The next person may tell you they have had it… Read more

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… 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… 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… 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… Read more

Oxygen warriors, question: how do you keep the oxygen tube from kinking over at the attachment site at the portable machine?

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… 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.

Eperisone, Muscle Relaxant, Seen to Safely Treat IPF in Mouse Model

Here is a easy page to read:

Eperisone, Muscle Relaxant, Seen to Safely Treat IPF in Mouse Model

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… 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… 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… 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… Read more

I suspect that more people who drown are just starting out with our disease, weather they are aware they have the disease or not.  In 2017 I was newer to the disease and did not understand the slow nature of the progression PF.  Consequently while snorkeling in the Caribbean I almost drown in area that should not have bothered me, lucky for me… 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… 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… 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… 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… 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… 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… 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… 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… Read more

I flew Ny to Paris.

I would still take the required batteries.

I have flown Delta and Air France and both I was able to use the outlets to power my inogen g3, one time the stewardess had the out let reset by the captain from the cock pit.

 

Another participant had shared ” Fisherman’s Friend ” cough drops, they do work really well for me.

Sitting I am 90, to 91. Walking I am 86 so I use portable oxygen up  to 5. Last time in Europe was July 2019 and I was 91 sitting but I was 88 walking. I would not go today. The oxygen concentrators do not filter out covid 19 and other viruses and you can not put a mask on the machine so you get the air from the cabin on the plane… Read more

Seems there may be a battery shortage, ( what’s next? )  I out grew my g4 and have a g3 but noticed only batteries available for g5 are with purchasing a new unit from innogen.  I have been to Europe 3 times with these oxygen generators, seems I needed 2 more pulse units when sitting and 3 walking around like to the bathroom. Not always do you… Read more

I forgot, throw the cigarettes away.  I use to smoke and quit 35 years ago.

I would guess that the eating thru the night is really bad. The cause of this lung disease we all have is probably linked to Gerd, sometimes silent. I would also guess the food is effecting your liver and the liver and lungs are close neighbor, next to each other.  I would suggest trying to stay a little hungry and eat 3 hours before bed.… Read more