[Natalie Mondor]

Are any of you on a home fill system? I think that Inogen makes one but it’s not the same as what folks are mentioning here, or is it? It seems like having one of these systems would eliminate the oxygen provider. Thanks
Natalie

[Natalie Mondor]

Hello PF caregiver

Yes, very frustrating. Here’s what I do to save some tank time. I’m also on 4LPM. In the car, I can be on 2LPM so I use the Eclipse I have and try not to move. Then I switch to the tank before getting out of the car.

Natalie

[Natalie Mondor]

Update on the Oxymizer: it works really well, but only on the tank. Not on the concentrator or the Eclipse. The research was done in a clinical setting where only tanks were used, so it makes sense.
Happy New Year

Natalie

[Natalie Mondor]

Here’s an update to this post from last month: I got a Sequal 5 (19 pounds) from my provider. The unit is both continuous (up to 3 LPM) and POC (up to 6 whatever ml that is). At 3 LPM, it has only 75 minutes of battery. It charges in the car, but only at 2LPM. Otherwise it will charge to 3 but it takes a few hours. I keep it plugged in 24/7. It is useful IMO, but has limitations.

I got an Oxymizer from Amazon for $25, no prescription needed. It took a lot of trial and error and calls to their tech line to figure out how to breathe. You have to inhale AND exhale through your nose. No mouth at all. Breaths need to be deep but at normal speed. Too shallow and your sats will fall. It’s hard to get the hang of it. It increased the O2 by about 20%. However I am hoping more practice will increase the O2 more.
On a bit of good news: I had a HRCT in mid October and there was no progression since early June. The Dr decided no Ofev at this time. Next PFT is the end of December.
Best wishes to all, Natalie

 

[Natalie Mondor]

Thanks to everyone for their responses. They have been most helpful. I will check out all the information you suggested.
Natalie

[Natalie Mondor]

Thank you Anne, Anna and Margaret for sharing. Invaluable information for all of us.
Natalie

[Natalie Mondor]

Hello Anne,

I’m seeing this post only just now in August 2022. I too have radiation-induced PF, from radiation therapy in 1984 for breast cancer. It also led to lung cancer in 2008.

I have learned a lot from members of these forums and I  hope by now you have too. Sometimes it’s hard to find specific information that I know I saw but lost the spot.

I hope you are doing better and will stay in touch.
Best wishes
Natalie

[Natalie Mondor]

Thank you for that post. I started doing the exercises 6 weeks ago and have seen amazing results. My PFT yesterday was stable. The pulmonologist looked surprised and said he was proud of me. I’ve given the exercises to my support group.

I am so grateful for your post.

NatalieM

[Natalie Mondor]

Thanks again for this tip. So you’ve been using the Helios for seven years! Then why is it not advertised more? Do we need better search terms?
So happy to have some hope to leave the house for fun !

Natalie

[Natalie Mondor]

Bill,

Thanks so much for sharing the information on the Helios Marathon. It sounds amazing! It also seems like a lot of people don’t know about it. Haven’t seen it in any lists of portable oxygen devices. Is there a reason?

Thanks again

Natalie

[Natalie Mondor]

Dave

I read that the oxymizer is for tanks and in home continuous units, not pulse machines.

Natalie

[Natalie Mondor]

Hello Dave,

Thanks for sharing details of your oxygen use. We’re all doing what we can. It’s hard to cope sometimes. This group helps.
Best

Natalie

[Natalie Mondor]

Thanks Jim. At least you’re having fun. You’re so right about the spirometer being a total drag ! Natalie

[Natalie Mondor]

Thanks Karen. I have an Airlife that I use but my sats go down too much if I don’t wait a good 5 minutes between breaths. I don’t seem to make much progress: still at 750, although I got to 1000 when I was taking prednisone. Have you increased your intake? Natalie

 

[Natalie Mondor]

Karen

Thanks for this information. I was thinking that maybe the Sequal 5 might work, as it goes to 3 LPM continuous and has 6 POC settings. But if I understand correctly, the max is still 3 LPM.
Hope you are doing well.
Natalie

[Natalie Mondor]

Randy,

Thanks. I completely agree. I spoke with a someone at the oxygen concentrator store in Colorado and he said that the POC numbers aren’t the same as the LPM numbers. The Inogen and others deliver the equivalent of 1-2 lpm continuous and those other numbers are to accommodate different breathers on the POC. But still no higher than 2 LPM.  Too few people need the higher oxygen levels it would seem.
Take care

Natalie

[Natalie Mondor]

David,

In my experience, doctors don’t usually talk about the long term effects of radiation or even know when the effects might take place. I think that is more recent. Using myself as an example, I had radiation for left breast cancer in 1984 and then lung cancer in the left lobe in 2009. Then the doctors said they didn’t know what caused the lung cancer (I had no risk factors), and disagreed with the suggestion that radiation was the cause. Fast forward to  the diagnosis of pf in May 2022, that the pulmonologist says was most likely the result of the radiation from 1984. Like you I am grateful for my life. I just wish I had had some warning, so I would have sought medical attention earlier to have  a better prognosis now.
Be well and thanks for posting

Natalie

[Natalie Mondor]

Anna,

Thanks for the link. It seems that they also post the webinars on the site afterwards.
I’m looking forward to finding out more about ILD.

Natalie

[Natalie Mondor]

Margaret,

Just reading your thoughtful post. You gave a lot of information that is new to me (thanks !). May I ask if you have more details ? Is the prognosis and life expectancy different for RIPF ? How long is the prednisone treatment ? Is any improvement possible ? Sorry for asking all these questions but I learned more from your post tonight than in 3 months of searching !

Gratefully,

Natalie

[Natalie Mondor]

Sorry! I meant Anne, not Anna !

[Natalie Mondor]

Thank you Anna Jones. Your words inspired me.
Do you have any more information on treatments for RI IPF ? My pulmonologist said he would put me on Ofev if the prednisone + physical therapy didn’t work. But I am doing well on the prednisone and increasing the exercise. I was diagnosed by process of elimination in May 2022 and have been on oxygen 24/7 ever since.
Today was a down day, so thank you again for lifting me up.
Natalie

[Natalie Mondor]

Anne,

Could you please elaborate on this ? I don’t have any info on how the treatment for radiation induced ipf is different or about the life expectancy. Thanks in advance.
Natalie

[Natalie Mondor]

Margaret,

Thanks for the information. I will check that out.
Natalie

[Natalie Mondor]

Jofac

Thanks so much for this thoughtful message. It has cheered me up today. I’m back on 10 mg of prednisone after having a very bad day at PT. It’s only been a few days but I feel better, although not as energetic as before stepping down. I am certainly going to stay with the exercise even if it’s difficult. I am hoping to go outside but my oxygen needs at the moment keep me pretty much inside.
I’m so happy for your success and your continued progress. Thanks again for cheering me up.
Natalie