Duncan Fowler
Forum Replies Created
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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 responded that was all well and good, but I needed to know that not using supplemental Oxygen would only hasten my death.Well, I have no desire to die now, so I suck my Oxygen and try to keep my SPO at or above 90!
I screwed up, didn’t listen to my Doc as I should have, and didn’t exercise as much as she wanted. Well, that has caused me to have an increased need for Oxygen and have to move from a small Oxygen concentrator to a larger one and use taller and heavier tanks too. I have to blame myself for this!!
Tell your Mom she can do better than I have and that avoiding the treatment will only hasten her death.
Hospice, by the way, is not for those who are close to immediate death. They do well with making people comfortable, and I know that some check out of Hospice after several months because they are doing so much better! Hospice is a great resource.Good luck to you both!!
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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 as possible.
I do take OFEV in both the 150s and the 100s. For me, I take the 150’s in the morning and the 100’s at night, and that combination has minimized the GI issues with OFEV and I don’t need to be concerned about exposure to sunlight. If you have issues with OFEV, then just try the 100s twice a day.
Esbriet, the other drug is available but it is my understanding you need to take several more pills daily and you may have a problem with too much sunlight.
So in my book the sooner you start taking them the slower the growth of your fibrosis and I assume
the longer you will live
Good Luck
Dunc -
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 and a 100 at night. I have been doing this for three months now.
That has worked really well for me. Now I rarely need to take an Immodium because of stomach upset.
Dunc
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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.
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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 listings.
The study can be found at:
https://pulmonaryfibrosisnews.com/2022/01/19/ofev-esbriet-not-cost-effective-ipf-treatment-us-study-reports/ -
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 the morning and 100’s at night. She agreed and it has really been working well for me.
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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. I stopped smoking in 1981. I noticed my shortness of breath when I was not able to swim lengths of a pool anymore. That was about 10 years ago.
Definitely start taking the anti-fibrotics your Dr is suggesting. (There are only 2 available now)
They will add years to your life!
There are only 2 on the market now. You can deal with the side effects if it means you get to live longer.-
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
🙂
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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?
Tell them you want to be seen again and be enrolled in any IPF programs they may have
Make and keep your appointments. Do what the Doc’s say.Dunc
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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
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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 or running?I understand that there are O2 concentrators that you can rent (again with a Dr’s Rx) buy are you on Medicare if so and you are qualified that would pick up that expense.
The 13-hour battery life is probably on its lowest setting. That my not be what you will require.
I do like Inogen. They have been good to me. I currently have a G4 and a G5. The G4 is fairly light and weighs 2.4 lbs with a single battery that would last about 5 hours on setting 2 I liked to travel with that one as it was not heavy. But now for travel, I need to take the G5 which is 4.7 lbs with the single battery and goes 6.6 hours on setting 2.I have backpacks for each but do try to use the G4 when possible because of the weight.
I don’t know where you live but if it gets below 41 degrees your concentrator does not work well.
Are you into Zoom?? If so it might be simpler for us to have a zoom call.
Dunc
763-684-4838 -
I have traveled to Alaska using an Inogen concentrator. This is what I needed:
- A form signed by my Doc saying I should use O2 while traveling. Most Airlines have a form available.
- An O2 concentrator which has been OKed by the FAA.
- Enough batteries for my Concentrator to last 1 ½ the time of the flight. (Carried in a pack so it does not go as checked luggage)
- My AC adapter for my Inogen. (Most airlines now have 110-volt plugs at your seat so you will not have to use your batteries. But they still require them.)
- Notify your airlines that you will be using O2 during your flight when you make your reservations.
Most airlines will have an online help section where you can get this information. Use the help section for each of the airlines you plan to fly on as some may have different requirements.
And have fun!
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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
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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,
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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.
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The Apple watch also prompts you to take deep breaths several times a day. That has to be good for us IPFers.
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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 be done before it can be considered a good and reliable treatment for us.
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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
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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)
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I have found that OFEV and wine causes me to have explosive diarrhea.
I miss my wine at night! -
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 have shown the remarkable ability of slowing the growth of fibrosis. And that means an extended life for you 🙂I’m have been on OFEV 150’s for several years and just tolerated diarrhea. But recently I changed to a 150 in the morning and a 100 at night and things are MUCH better for me.
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Lawrence, I have you beat at 82!
😉I am still looking forward to a 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 at night. Been doing that for 2 weeks now and I am not really experiencing any side effects. If this continues I will work with my Doc and see if I can continue after I run out of my supply of the 150’s
There is always hope and who knows, things might get better as far as the testing.
I do feel positive about that!
(And besides. I have a Granddaughter in the 9th grade who is truly an excellent soccer player. I want to be able to see her in the Olympics!)
🙂
Dunc -
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