[john styles]

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 survive beyond 3 years.

[john styles]

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.

[john styles]

As the  disease progresses the need for oxygen increases and so do the effectiveness of the machines available. I have found the pulse machines work 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 partially closed door helps with the noise. I have used the innogen and personally found the g4 flawed in that the support strap attaches to the machine and not the case and the g4 columns need replacement more often.  I personally like the g5 as the case is more help against water as it has plastic cover verses a cloth cover like the g3, still need to keep it dry. I have flown and traveled to Europe several times using oxygen concentrators and now just do traveling in USA, I will take a Innogen stand alone for use in hotel rooms to save on batteries. Got a puppy to keep me walking with my oxygen concentrator, Got to keep living until I have problems getting out of the chair. God bless us all for dealing with this terrible disease.

[john styles]

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 environment  so I do not understand how a mask would benefit me.

[john styles]

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 them.  There will always be people with different opinions and I have accepted that.  Recently I thought of the song ” no where to run, nowhere to hide” after I walked into the assisted living center my 98 year old Mother is in and the first occupant we met said she had a sore throat and the the director had covid, came home and my yard man said he was sick then my daughter called who I had dinner with 2 nights before to tell me her friend she had dinner with 2 nights prior now had covid. I started humming the song from 1960s. On a positive note I watch the Israel covid news because they are two months ahead of USA with the Pfizer vaccine.

[john styles]

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.

[john styles]

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.

[john styles]

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 would have not done the biopsy.

[john styles]

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.

[john styles]

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

 

 

 

 

 

[john styles]

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. Real exciting when we see a press release, just hope Emphy corp gets their licensing agreement so it can come to market.

[john styles]

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.

[john styles]

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 after recovery I was motivated to get the booster. Our government is great but they are waiting to see the data? That apparently means people get sick and die and then the cdc will recommend the booster. I did not want to role the dice.

[john styles]

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 treatments, my inflammation marker was real high but after doing laser it is normal. I also watch this website for news and noticed the the drug with marketing name nexium reduces scaring in lungs in mice, so I continue my nexium. Exercising the lungs and walking, today my dlco 3 years later is 10.5.  Hang in there and god bless and good luck.

[john styles]

I flew Ny to Paris.

[john styles]

I would still take the required batteries.

[john styles]

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.

[john styles]

 

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

[john styles]

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 unfiltered. There are other raspatory viruses out there. If you must go there is no other choice but to use the oxygen concentrator and they must be pre approved before arriving at the airport. I remember having a custom agent think he had something out of the ordinary in Amsterdam because I had extra batteries and the charge with me but I finally go cleared when a supervisor looked over everything.

[john styles]

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 get a outlet that works at your seat so carrying extra batteries can help.

[john styles]

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

[john styles]

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. I personally had my general practitioner say nothing wrong on the x-ray and went to the pulmonologist and he ordered a ct scan and the confirmed the pulmonary fibrosis. Good luck.

[john styles]

Welcome,  I have usual interstitial pneumonia. Had a lung biopsy that turned into a thoracotomy and discovered I had connective disease around the lungs.  5 years after my diagnosis I am still here. DLCO basically the same 10.4  March 2018 and 10.5 March 2021. Fev1 March 1.49 and Fev1 march 2021 1.27.  I had a blood test for inflammation in 2018 and was high and after doing laser my blood test for inflammation is normal. I do laser on my lungs twice a week, and prednisone 10 mg. Lately I have lost weight, stopped drinking and eating after dinner. I take Nexium 20 mg twice a day ( article published on this web site of benefits of Esopremazole from Baylor university ). I also take a multivitamin. Use 2 liters of oxygen at night and portable unit when walking distances. Try to walk 2 miles a day 3 or 4 times a week. Good luck.

 

 

 

 

[john styles]

The laser is a un approved treatment that many people use.  More information can be found on this site under laser. Andy Hall is a chiropractor with pulmonary fibrosis who is very knowledgeable about laser.  He can be found on this web site or on Facebook laser group.  The gerd is something to really watch out for. Gerd can be silent and you do not know you are suffering from gerd. Many people do supplements, I do laser. I do not think the laser stops the disease but like the prescription medications I think it slows the disease by reducing or eliminating the inflammation.