Ben Robinson

I made it 6 years and was supposed to die in two. Even though they tried to kill me without trying to with their negligence. Take the diagnosis and prognosis with a grain of salt as cited by the gentleman above.  Everything is not IPF at all.  These doctors…..

I am on my 6th second opinion and going for more.  Starting with Johns Hopkins, reputedly no. 1, with my doctor treating Trump on TV ( no politics involved here at all just showing the reputation of the man selected to treat the President at the time )  called for a lung transplant and said i would be dead in two years.  But then took 4 years to…[Read more]

<span style=”caret-color: #303030; color: #303030; font-family: ‘open sans’; font-size: 13px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%;”>I have a PH doctor who gave me a prescription for TYVASO inhaler which cost my insurance $15k per month.  It has worked well in giving me the ability to work out and get…[Read more]

I have been using the Millennium M10 stationary concentrator for in home use with a humidifying bubbler and high flow cannula up to 10L with the long green hose.  Then i use the Caire Sequal V portable rolling unit at 6 L pulse with high flow cannula to get around.  I use 2 liters sitting and sleeping with a low flow cannula.  Very happy with th…[Read more]

I have a PH doctor who gave me a prescription for TYVASO inhaler which cost my insurance $15k per month.  It has worked well in giving me the ability to work out and get around better.  I try to keep oxygenated to minimize the vasoconstrictions and vasospasms also as your soft tissue sends messages to your body to close off the poorly oxygenated a…[Read more]

I took it for three months with protein and carb perfect diet and was fine. Then the acidy type of effect hit my lower GI with various unpleasant affects   So I had to stop and now i am stable after 4-6 weeks being off of it. So it was apparently the cause of my stomach issues. If I start again I will try the 100 mg dose. However I may have…[Read more]

My doctor was on national  tv treating president trump with corticosteroids for Covid lung  I had mentioned this in a previous post. But so he wouldn’t give them to me due to side effects stance he had taken at the time.  I guess Connelly and the other doctors set him straight on the needed dexamethasone. He told me I would be dead in two year…[Read more]

the oldest New Years resolution in the books. Exercise more. Weights and cardio.  That is the key to healing PF or at least extending the years.  Crank up the O2And bust hump.   it is hard but do it.

Pursed lip breathing saved me on my first airplane flight at 30,000 feet when my oxygen dropped like a rock and I had not brought a concentrator back in 2015.  It worked and raised my sats back up several points. I was glad to have remembered it from rehab. My Johns Hopkins doctor looked astonished when I told him of the affect of the high…[Read more]

I have had luck with Gabapentin prescription and Tart Cherry Juice Cheribundi at night evening before bed to help me sleep.  I am worse off than you guys fromCovid 15 LoL. Ate up my right lung.  Lack of diagnosis and treatment also. Many just know COPD and Asthma and not ILD PF. My  Johns Hopkins doctor was against steroid use but then went on TV…[Read more]

Ofev is a problem for everyone stomach   Acidy type of activity.  Gets worse as months go on   The right food helps   The type of food varies by person to person.

Phlegm or mucus is a sign of inflammation only remedied by prednisone.  I say where there is smoke there is fire. Mucus is the smoke inflammation is the fire.  Bursts of two 20 mg tablets for 5 days every 4th week is the best medication I have going.  The 7.5 mg per day maintenance between.  This way there are no side effects. I have NSIP aut…[Read more]

I think the autoimmune suppressant lung transplant medication may have prevented the virus from turning into Covid disease and an autoimmune over reaction which does the most damage on you as it did me who has been on CellCept for a couple years. I had the same symptoms from the virus and no lung action. Lucky me. That’s is what I figger anyway.  …[Read more]

Cheers let’s hope something good like new treatments for our forgotten lung disease now come from this virus studies. I would like to know about lung regeneration myself as I have autoimmune PF and am healing in my 6th year. Started reversing at year 4.5. Take those CT reports with a grain of salt. Even Johns Hopkins doctors can’t half read the…[Read more]

A doctor is needed for this diagnosis. I don’t think it is the Ofev.

Take enough oxygen say 2 liters to get your oxygen sat above 90. She may require higher levels upon exertion such as walking around when the blood moves faster through the lung.

Get some low dose Lasix prescription  from your doctor and clear that up before it damages your skin and all.  Low dose is no side effecta but you will pee a lot.

It is standard to have three different oxygen levels – one for resting, one for exertion and one for sleep.  7 is high flow and should only be used for the exertion as you say. Used all the time it will probably irritate your lungs as it did mine. The 3 sounds about right for rest and maybe even 2 for sleep.   This break in high flow should keep y…[Read more]

You can absolutely take too much oxygen. Google Oxygen Toxicity. Very dangerous. I have been suffering from it and it inhibits my ability to take oxygen. Then oxygen burns and causes pneumonitis lowering saturation levels further.  Once you are stricken the only cure is to sit still and minimize your oxygen usage. Obviously a disaster. I am on…[Read more]