Ben Robinson

Yes. If it irritates and makes you cough badly with mucus like me then it could be causing inflammation which decreases lung function.  Other than the irritation it sounds like a doctor question.

Go see a Good cardiologist. I take Sotalol And  Metoprolol for that to slow it down. Good drugs with no side effects  If you have an arrythmia or SVT event they may put you on Elequis, a blood thinner also a good drug to prevent stroke.

That’s me anyway. But the PF does affect the heart which I am living proof

Tyvaso inhaler  is merely a Vasolidator and is for PH Type 3 only and has no affect on PF itself but will widen the capillaries in your alveolar packages damaged by the PF improving blood flow.  Don’t waste your time thinking it is a PF cure or something.  I doubt that a prudent doctor would even prescribe it for anything other than PH. PAH is c…[Read more]

Vincent- no i am in the USA and not familiar with the UK Market for Concentrators.  Good advice to get a finger oximeter from the others.  sounds like you may need a stationary unit for home use that puts out up to 10 lpm continuous flow- the Millenium company makes a good one here.  You will also need a portable unit that puts out 6 to 9 lpm pu…[Read more]

I feel very lucky to have a good one and good family coming to my aid.  I was once proud of my physical prowess and never dreamed i would have to depend on others like this.  I use the word caregiver proudly and am thankful for those around me.  God bless those who give of themselves like this for others.

I am on Tyvaso now. My good insurance luckily covers it which i also work hard for.  It is for PH Type 3 Lungs where the capillaries and small veins and arteries have narrowed   It is a vasolidator which expands these narrowed blood flow corridors in the lungs so that perhaps they may recover after the blood flow fills back in them.  PH res…[Read more]

Alert!!    75% is extremely low and quite dangerous.  I am not sure how she is getting along a all at that level.  I can’t imagine any doctor releasing her without oxygen waiting and also portable oxygen.  I had to buy in home concentrators on line- a Millennium M 10 and a Sequal Eclipse 5 myself.  Best of Luck to you!

Yes the insurance pays the $15000 per month because luckily I kept my good full work care first insurance as a backup to Medicare.

your pulmonologist will recommend you for a transplant when you are at that stage. There is a long evaluation and acceptance process which I am in now. Don’t do it until you are really bad like on full oxygen and m…[Read more]

Hi Christie

Tyvaso is for PH pulmonary hypertension. I have type 3 lungs. The internal alveoli of the Lung are little package units with the small blood vessels and capillaries which also become badly damaged with the fibrosis.  They become inflamed and narrowed and then hardened in that narrowed state. Tyvaso I use is an Vasolodator inhaler and…[Read more]

I just started the Wei and breaking open the capsules takes time. I am at a Hail Mary point and heard good feedback on line. I will spend about $10 grand on it. I will let you know how it goes. I work hard remotely for a reason. Good Health insurance and the sheckles for medical items like this and other and a 1000 a month German shepherd to keep…[Read more]

I have some of that.  Can you describe it better.  Mine is more related to oxygen hitting the damaged areas.  Is that your case or is it burning even without oxygen.?  Is it burning on the outer lung by the chest wall or inside the lung more?

I have the throat clearing also.  I think it may have to do with the proximetry of your fibrosis to your throat areas.  I noticed some indications of that in myself.  If prednisone heals my inflamation the throat clearing goes away and has mostly gone.  It is apparently related to the inflammation which prednisone attacks.  I have PF auto…[Read more]

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.