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… 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… 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… 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… 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… 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… Read more

This is based on my experience as Medicare recipient. When your pulmonologist recommends oxygen, his/her office may or may not recommend a O2 provider. I STRONGLY RECOMMEND that you DON’T make a choice immediately but research what is available. In my case I went with a provider the office used in the past and I regret my choice. You should also… 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… 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… 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… 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… Read more

As a clinical psychologist for the last 44 years and one with IPF of the Usual Interstitial Pneumonia type, requiring O2 use all the time, I thought I’d share some of what my experiences and training have taught me about dealing with bad news.

When people hear bad news such as you have IPF, it is common to have negative thoughts such as  “This… 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… 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… Read more

 

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

Is it appropriate to sell something using this forum.. I have had to switch from my simpli go mini to tanks and have two good batteries that I would like to get rid of.

Things have changed since by Dec 11 post.  A pulse of 5 is no longer sufficient for any kind of sustained activity.  The rental company I have would have solved this problem by given me a tank which would keep me from flying.  As a result I cringed and spent the money to buy a different portable, but not backpackable  machine; the Claire… Read more

I switched from Ofec to Esbriet well over a year ago because of the side effects.  I’m sure I have some side effects from Esbriet but it’s hard to tell as I have been on IPF meds for a couple of years.  The gastro symptoms did improve.  If you look at the research on these two drugs you will find that compared to the control group they both… Read more

Hi, I have a Simply Go Mini and have been quite pleased and have a larger home machine, Everflo IP21 that is continuous O2 and I use at night for sleep and around the house when I am active at any degree(Has a 50ft tube.) I have Tricare for Life (Medicare +Tricare) and they rent equipment and you deal with a O2 provider. I like my mini, a… Read more