I agree that keeping your Mom’s SPO as close to 90 as possible is essential.  I, like her, really don’t like having an oxygen tank following me around, and yes, I want to set it down and forget about it for a while!
But when I was initially diagnosed with IPF, I told my Doctor that I had no desire to be connected to Oxygen all the time.  He… Read more

I just signed in and saw Phil’s comments to you.
He is right on!  Please give them a call.  Try:
“Call OPEN DOORS at <span class=”white text-decoration-none text-nowrap”>1-866-‍OPENDOOR</span> (1-866-673-6366) to learn more about your OFEV prescription and what financial support options may be available to you.”

Darcy
By now you must understand that even slow-growing fibrosis of the lungs can and probably will eventually cause you breathing difficulties.
The 2 drugs that FDA has approved for treating IPF just slow down the growth which should mean you will have normal breathing for longer.
If I were you I would want to start on one of them as soon… Read more

And, it has turned out that my insurance company continues to support my use of OFEV no matter what the dosage  Each month I get 30 150’s and 30 100’s.

I also had been having lots of diarrhea for the years that I have been taking OFEV 150’s.

My doc suggested that I might want to go to the 100’s but, I was concerned I might lose ground as far as my IPF went.  She did give me an Rx for 100’s, and I had lots of 150’s leftover.  Rather than waste the 150’s, I decided to take a 150 in the morning… Read more

I think it may have something to do with this study that was released saying that OFEV was not cost-effective.  Their logic also applies to Esbriet as I think the prices are similar.  OFEV and Esbriet are the only drugs that the FDA has approved for treating IPF.

I would appeal their decision.  Both drugs are on most insurance approved drug… Read more

Yes, Probably since 11/17 I have been on 150’s twice a day since then. I have had bouts of diarrhea but I kind of toughed it out as I have been fairly stable with my IPF. A couple of months ago my doc suggested that I switch to 100’s twice a day. I was reluctant but tired of the bouts of diarrhea. I suggested that I switch to 150’s in… Read more

Cecil, I am not a Doc, but I would just assume that if you have an IPF diagnosis that it may well progress. (Nasty Stuff)
Yes, ammonia can damage your lungs and I don’t have any idea if such damage would lead to a progression.
But IPF being what it is, I would assume that it could be and go on OFEV or Esbriet if your Doc prescribes it. Both… Read more

I should note that the “filter” I use when working with Ammonia is an industrial filter designed for that purpose.
And Ronald, I believe you meant your note to go to Cecil instead of me 🙂
But that’s OK as the group gets to see all of our notes.
Happy Ground Hogs Day group!!
Dunc
🙂

I have wondered about that too and actually bought a mask and filters so I can clean our oven.

But I have also used “Wet and Forget” and wondered if that may have caused some of my issues. I do think that my real problem started when I was a volunteer fireman and smoked, But the fireman part of my life was in my late teens and early 20’s.… Read more

Lawrence, I have you beat at 82!
🙂 been taking

I am still looking forward to scar treatment in my lifetime.

I was diagnosed in 10/17 and have been taking OFEV 150’s and was getting tired of dealing with the side effects.

Recently, I was put on 100’s.  I had a good supply of the 150’s so I started taking those in the mornings and the 100’s… Read more

Be more aggressive with your medical providers.  Make sure they know that you want care and are willing to do what they ask.  Has anyone given you a reason for being discharged?
Make and keep your appointments.  Do what the Doc’s say.

Dunc

Consider one of the diet plans that deliver your food to you.  I used Nutrisystem and lost 60 lbs over a few months.  Not much to think about except getting Veggies and Fruits.  I thought it was a good plan.  They have been advertising $299/month which replaces much of your grocery bill.

Good Luck!

Dunc

Your welcome Bill
You need a Dr’s Rx before you can get O2 equipment or supplies. But hearing that your 95 after doing a 6-minute walk (I assume without supplemental Oxygen) it sounds like you are just beginning. That is great!
Why did you see the Dr about your breathing? Was it just starting for you to bother you when you were swimming… Read more

I have traveled to Alaska using an Inogen concentrator.  This is what I needed:

1. A form signed by my Doc saying I should use O2 while traveling.  Most Airlines have a  form available.
2. An O2 concentrator which has been OKed by the FAA.
3. Enough batteries for my Concentrator to last 1 ½ the time of the flight.  (Carried in a pack so it does…

Read more

I am on 150  mg OFEV 2X daily.  I usually have milk with my meals.  I never noticed that this was a problem.

Yes I have had diarrhea on occasion but I have never associated it with my OFEV.

Dunc

Yes, I participated in one at Mercy Hospital located in Coon Rapids MN.  The RT was Robbie Crannick.

It was a helpful class as it made me get there and exercise

Dunc

 

Duncan Fowler,

DuncFowler@Gmail.Com

I do wish it would also give us our Blood O2 saturation.

I have suggested this to Apple at

https://www.apple.com/feedback/

You can too.  Maybe if enough of us do that Apple will implement the idea.

The Apple watch also prompts you to take deep breaths several times a day.  That has to be good for us IPFers.

I sent a note to my Pulmonologist about Metformin.  She is also well involved with the research community.  Her response was that there are enough significant differences between Mice and Men (And ladies too) that you should not draw any direct conclusions about how it will work with IPF in humans.  That there is a lot more research needed to… Read more

Charlene,

Unfortunately yes.  For me, it is Red or White.

Although If I have my wine with a meal all seems to be OK

Dunc

I too have looked for a watch that accurately displays O2 saturation.  I don’t think there is one on the market yet.  Maybe Apple will include it in a future build.  (I do like my Apple Watch)

I have found that OFEV and wine causes me to have explosive diarrhea.
I miss my wine at night!

I have had the issue of moisture condensing in the line going from the concentrator to the nose piece.

I have found that always filling the humidifier bottle NO MORE than 1/2 of distilled water seems to work for me!

Good Luck

Dunc

It does make sense that Vaseline is flammable.  It is a petroleum product.

Afrin, here in the States is an over the counter (OTC) nose decongestant.

Here we find it in Grocery stores, Drug Stores and on-line such as Amazon. 🙂

It is supposed to keep you unplugged for 12 hours.

It seems to work fast for me.  But, you can always pinch your… Read more

Hi Charlene,

Yes I do take OFEV and do suffer from nosebleeds but I don’t believe it is the drug.

I am also on Oxygen for about 16 hours/day and that includes while I am sleeping. I have been told that nose bleeds and Oxygen users are quite common.  The key to prevention is humidification for me.

If my humidifier bottle goes dry on my… Read more