Stuart, Actually I know very little about it and I have more questions than answers. I participate in a large PF support group and I believe there are several in the group who have autoimmune related PF and they’ve been in the group for many years with little or no PF progression. It is my understanding that they take immunity suppressing… Read more

Hi! First, I’m not a Dr. and don’t play one on TV. I’m just another IPF patient. I assume you have IPF and the “I” stands for Idiopathic and the meaning is that the cause of the PF is not known. So, is it progressive? The answer is yes, unfortunately. If the cause were known and an autoimmune issue, I know of many that have been virtually… Read more

Toni. I also have IPF, diagnosed 3 years ago. I’m no medical expert, but…

On waking up from your several hour nap, in addition to high BP and HR, are you also breathing rapidly (breathless)? Even if not, I suggest you immediately check your SpO2 level with a pulse oximeter.

Have you been prescribed supplemental oxygen?

Do you have… Read more

Does your dad use a cannula or wear a mask like device over the nose? If a cannula, I’d suggest trying a mask. I can imagine that having that much oxygen jetted directly into the nose could cause excessive and unnecessary nasal tissue irritation.

I’ve been using the Inogen TAV with my oxygen tanks for over a year. I find it very useful for my purposes. However, my need and purpose may differ dramatically from yours. I do not use supplemental oxygen except during physical exertion. I classify physical exertion as anything more strenuous than a leisurely walk on flat ground. I do not use… Read more

Mark – Is you cough a productive cough? You mention phlegm so I assume it is. Is a portion of the phlegm coughed up in the morning thick/viscous and colored?

I too have an intermittently running faucet for a nose and a chronic problem with bronchial phlegm/mucus that has me frequently coughing and clearing my throat. “I” believe this is due to damage done by a decades long bacterial infection that “I” believe was also an underlying cause off my IPF. If and when it becomes available, I’m hopeful… Read more

N115 / Sodium pyruvate nasal spray. I’m not a Dr. and do not play one on TV. I’m just an IPF patient with limited treatment options like the rest of you. I too find the last phase III trial intriguing. I have not been able to find the nasal spray on the market with or without a prescription. However, sodium pyruvate is available in powder… Read more

Allan,

Again, I’m not a Dr. and have no medical training of any kind. Consider the source.

Phlegm with yellow color… When I had the bacterial lung infections, yellow was the color of the thicker, tacky phlegm that I could, sometimes, get coughed up from the lungs. Sputum culture of this phlegm yielded the bacterial infection, heavy… Read more

Hi Mal,

Let me first say I’m not a doctor and do not play one on TV.

Decades ago I was diagnosed with chronic bronchitis with the primary symptoms being chest wheezing, crackling and chronic productive cough. I was told nothing could be done about it and given inhalers to ease symptoms. I also suffered from sinus pressure & drainage, sense… Read more

Malcolm,

Is your cough a dry cough? Or a productive cough (do you cough up mucus/sputum that you swallow or spit out)? If it is a productive cough (as mine is), I have a story to tell and a bunch more questions that might be helpful. Thanks!

I’m in the same situation as Bob. No IPF cough. Frequently, not always, early morning cough to clear mouth and throat. I’d sure like to figure out what’s different about the mornings that I don’t have problem. So far I have no clue.

I’ve got it too… But assumed it was from old age and depravity…

Inogen TAV (Tidal Assist Ventilator): This is a relatively new product and I believe I am one of the first to buy and use it. It functions as both a conserver and to provide ‘tidal assist’. It works with gaseous O2 tanks or Inogen’s special model concentrator that delivers the higher pressure (50psi) needed by the TAV. There is a full… Read more

Conservation of the oxygen supply:  As has been discussed above, the pulse modes of the POCs are designed to help conserve their output O2 and deliver it more timely/effectively to the patient. Another method of conservation is to add an O2 reservoir at/near the cannula to store the O2 from the concentrator during the patient’s exhalation and… Read more

<p class=”MsoNormal”><span style=”font-size: 12.0pt; line-height: 115%;”>Liquid Oxygen (LOX) home and portable systems can deliver significantly higher flow rates than concentrators and have light weight portable sizes that can deliver high flow rates for significantly longer periods than portable concentrators or gaseous oxygen tanks.… Read more

I give up…

This is information that I’ve collected and tabulated myself doing web searches. I have IPF and use supplemental O2, up to 8 liters per minute (lpm) for more than leisurely activities. I am also and engineer and am working with a group at Johns Hopkins to develop more effective supplemental oxygen systems.

NOTE: PULSE settings CANNOT… Read more

Prices were approximate about 6 months ago.

Best source of information I’ve found (though they are selling them) is: Oxygen Concentrator Store: Oxygen Suppliers for Oxygen Equipment

Data I collected a few months ago. Prices were approximate at the time…

https://www.oxygenconcentratorstore.com/ is one of the best sources of information that I know of. Of course they are trying to get you to buy as well.

Here’s some data I gathered some months ago…
<table style=”border-collapse: collapse; width: 513pt;” border=”0″ width=”683″ cellspacing=”0″… Read more

First a disclaimer: I’m not a doctor and I have not played one on TV…

I have, for decades in the past, suffered from massive night sweats. Also decades ago, complaining of chronic productive cough, I was diagnosed with chronic bronchitis probably as the result of previously being a heavy smoker. I was told there was nothing they could do… Read more

After being diagnosed with IPF my Pulmonary Dr. advised me that regular, long term use of albuterol is harmful to the lung tissues. I believe he indicated it could thin/weaken them. I’m using one inhaler, the powdered steroid type (Advair) up to twice per day when I think it could helpful to relieve asthma like symptoms.

@rjshank

Hi Richard. Hope you are doing well. I’m a newbie here and just started looking into WEI. On Feb 1 2019 you indicated that you just started taking their products. I haven’t found any subsequent comments from you regarding how you are doing with it and what you think. If you have, could you point me in the right direction?