Marianne

I have never thought of contacting my insurance agent regarding using oxygen.  I only use oxygen (a POC) when I am out and about.  At the present time I do not use oxygen at home during day or night.  I have a question about using oxygen when I am out and about.  My doctor prescribed 2 liters on exertion.  Recently when walking with 2 liters I ha…[Read more]

Hi Lora Lee –

Have you tried any receipts by Forks Over Knives.  They are vegan so not vegeterian.  I have found some really good recipes on their web site.  I was eating strictly vegan for awhile, felt better and lost some weight.  I got away from it.  I am not found of soy so that limited some of my meals.  I ate alot of beans for prote…[Read more]

So sorry for your loss.

Marianne

Hi all –

I was diagnosed with IPF in May 2019 after a VATS lung biopsy.  All other testing only told doctors I had a possibility of 3 different interstitial lung diseases.  I have been taking OFEV since mid 2019.  I take 150 mg twice daily.  I tolerate it pretty well.  All my PFT and blood work have been fine until Feb. 2021.  My PFT showed a sha…[Read more]

Karen –

Thanks for the note about BP.  I do monitor BP at home.  My BP is usually pretty good at home and at the doctor’s office.  Not sure why it was so high that day.  I did not know I was doing the 6 minute walk test until about 20 minutes before I did it.  Originally, my doctor was booked solid until the following month for the 6 MW test…[Read more]

Elizabeth –

From what I understand most of POC go up to 4 or 5 liters.  There might be some newer units that go up to 6 liters.  In the US if you are on Medicare as primary insurance you can rent an older POC unit.  If you want a newer model, you must either rent it yourself or buy it outright.  They are great for walking and exercise but wit…[Read more]

Hi all –

I don’t have a caregiver yet.  I recently went on oxygen upon exertion.  I am still able to live by myself.  I have 2 adult children.  One lives 1 hour away from me and the other lives out of state – about 8-9 hours away.  My children have never wanted to take about my IPF before.  Now the one who lives 1 hour away wants to discuss me ei…[Read more]

Hi Char and everyone –

Update. I was getting so frustrated as oxygen supply company was not returning my calls I just stopped by their office yesterday to get some answers.  The POC has been ordered but has not yet arrived.  It doesn’t appear that it has been shipped yet.  I talked to a supervisor and voiced my opinion that they needed to re…[Read more]

Hi all –

Most recent news concerning getting a POC from oxygen supplier. I got a telephone call on Monday 4-26-21 from oxygen supply company that they agreed with my pulmonary doctor that I “qualified” for a POC.  It would take 3-4 days to get one to me.  They will call back when they have a unit available.  So hopefully I will have a unit so…[Read more]

Vince –

Sounds like your mum is getting the care and oxygen she needs.  I am in the US and having trouble getting the supplemental oxygen my pulmonary doctor prescribed.  It was prescribed March 5.  Apparently, there was some confusion as to what paperwork was needed.  The paperwork has down been sorted.  The oxygen supplier is waiting for veri…[Read more]

Cough comes and goes.  Think it is a result of GERD and IPF.  Sometimes a cup of hot water with lemon helps.  I also have allergies but not food related.  Some things that seem to set off my cough is laying down flat to sleep or rest, talking, drinking tea or a drink with caffeine (assume because of GERD).  Rarely does a day go by that I don’…[Read more]

Don’t have that issue but walking and exercising with a 10 lb. bottle of oxygen behind me is not fun.  Still fighting with oxygen supplier and hope to get POC soon.

Marianne

Sam –

Would it be possible for your head to be elevated with a pillow to get a scan?  Can you lay on your back at all?  I very seldom sleep on my back.  I can not lay flat because of GERD and IPF.  When I go to the dentist I have to have my head elevated when they clean and examine my teeth.  I also cannot lay down flat to get a massage.  I must…[Read more]

Hi everyone –

I find it very interesting that so many of us are having body temperature issues.  I also find it I have more coughing that it also affects my body temperature – it makes me sweat and have a higher body temperature.  I recently started oxygen on exertion.  I do not yet need it at night but I am getting close.

Wow – it seems like mo…[Read more]

Bernard –

Sorry you are having issues with IPF and doctor availability.

I am in the US.  I was diagnosed in May 2019 with IPF.  I see a pulmonologist at a local teaching hospital which has a lung clinic.  He has been wonderful.  I currently see him every 6 months and have PFT every 6 months.  Blood work every 3 months.  My doctor always is avail…[Read more]

Sree –

Pulmonary rehab is excellent.  My doctor prescribed it and it was covered by my insurance.  I am in the US.  I believe I was on Medicare at the time.  My prescription was 3 times a week for 8 weeks.  Part of the class was learning about the various lung diseases and the other half was exercise.  We basically worked on treadmill, arm machi…[Read more]

Christie and Char –

Thanks  for the information.  I did not realize that Pulmonary Fibrosis Association helped with oxygen.  That is great to know.  My problem isn’t insurance coverage as I have Medicare plus a Supplemental Policy.  The problem is that the oxygen company does not want to supply what the doctor prescribed.  It is just frust…[Read more]

Bill Kelly 0

Thanks,  I did not know this fact.  I researched and it looks like there are only 2 companies in my area that charge the Medicare approved amount and accept assignment for oxygen costs).  One of them is on the list which my pulmonologist gave me .  I will check with them.

Marianne

Hi everyone –

Update on oxygen levels.  I have been using supplemental oxygen 2L when exercising and on long walks.  Pretty sure I am going to have to start using it more as I am dropping my oxygen levels when taking a short walk, plus running short errands – like to the grocery, etc.  I am still having issues with my oxygen supply company not pr…[Read more]

Christie –

I too got my 2nd Covid vaccine shot.  I only had a very sore arm for 2 days.  Later this week it will be 2 weeks since my 2nd shot.  Both my adult children have received their 1st Covid vaccine shots with just a sore arm and being tired.  I am very thankful both children were finally able to receive their vaccines a bit early bec…[Read more]