Doug

Rebecca,  I have Medicare as my primary insurance and Tricare as a secondary provider; Tricare is a benefit for being retired military.  I don’t know if the Tricare is involved in payment or not.  My cost for 30 Esbriet is $24.00 a month.  I was wrong about Esbriet being generic, but it is in the process of becoming available as a gen…[Read more]

Medicare pays for Esbriet, at least in my case.  Also, I just read it is now out in generic form.

When it was time for me to be placed on O2 my Pulmonologist’s office gave me a list of providers.  I would think your Pulmonologist’s office would have the names.

Anne, I first saw a pulmonologist in December 2013.  I was diagnosed with IPF in February 2015 and later after a biopsy in June 2017, the UIP type.  In August 2018 I started on O2.  I don’t think it’s possible to tell when the disease first started.  I’m on O2 24/7 and 10lpm is needed if I do anything other that be still.

Marj, I don’t know what advice I can give you living in the UK—I was first placed on O2 after my pulmonologist had me do an O2 check while I slept.  He found, which is very common in people with IPF at some  stage, that while asleep my O2 went well below 88%. When you sleep breathing becomes quite shallow at time.  That is why they prescribe a…[Read more]

As far as I know we humans are the only creature that can make the present worse by focusing on what may happen in the future or what happened in the past.  While it certainly is easier said than done, I focus on today and the very near future and make it the best I can.  I don’t know how much longer I have as I am on high levels of O2 and very l…[Read more]

Responding to Phi–Your didn’t mention whether or not if your on O2 and if so how mucht.  There is no way to tell how long you will live with this disease at your point with PF.  Obviously the worse your symptoms the shorter you life expectancy.  Make the best of today!   My history consists of an x-ray in 5/13 showing “parenchymal scar…[Read more]

A couple of things to know.  1.  The air pressure in an airplane is set and 8,000 feet so you may need O2 on the plane but not in your home area. 2.  The airlines require at least 1.5 times the flight time in battery life for any flight.  You would also need to consider the time rushing around the airport before and after the flight as you may nee…[Read more]

88% and below.  You should take a six minute walk test and do a sleep test to get the best info.  I first was put on a large concentrator  as a sleep test showed I dropped into the low 80s while asleep.  (While asleep you should be on continuous flow and not pulse) I didn’t need to use the portable concentrator unless I was involved in str…[Read more]

The pulse machines do require a certain level of inhaling and exhaling to work.  I don’t think that is much of an issue for most people while awake.  Continuous flow is recommended while sleeping, if necessary, as when asleep breathing may become to shallow for pulse machines to work.  Continuous machines run down batteries much quicker and th…[Read more]

I have been happy with the Respironics machines furnished by my Medicare approved O2 provider.  I started with the Simply Go Mini  and the Everflo continuous concentrator for night.  As my disease has progressed I am now on E tanks and the M10600 Continuous flow that goes up to 10lpm continuous.  I guess my next step is the big large tanks; I sur…[Read more]

I took my last and final airplane flight last December; it was just too difficult and frustrating a process to continue anymore.  It was a 5 hour flight form Honolulu to our home area in Sacramento.  We have a couple of time shares and during our retirement years have flown numerous times going to timeshares and cruise ports.  Once I needed O2 my…[Read more]

You have a real tough decision.  I was diagnosed with IPF and later after a biopsy in June 2017 the UIP type.  I started on Ofev.  The grastro side effects were too bothersome to continue so I switched to Esbriet.  I have side effects but I have decided they are worth it considering the medication may be helpful.  The problem is you have no way…[Read more]

I assume you live in the USA.  I would think you are eligible for some kind of insurance with all of your lung issues.  Call your county health services and see what advice they could give you.  Good luck.

I’m not sure whether your taking Esbriet or Ofev, but it really doesn’t matter as both encourage with food.  I started on Ofev but switched because of side effects.  I still have them but they are more tolerable.  In my case I just eat something before I take a pill.  I take one with breakfast and one with dinner.  On Esbriet you need a third so …[Read more]

Based on my experience IPF isn’t diagnosed by Xray.  The xray may give reason to suspect it  but a more advanced CT is the next step.  I would definitely see a pulmonologist.  In my case after a CT I had a lung biopsy though I don’t know if I’ would have it again.  A legitimate  diagnosis of IPF is not reason to start O2; having O2 levels below…[Read more]

Thank you.  I had no intention of violating policy; that is why I asked.