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

I’m feeling super tired and shaky. Food seems to help a little bit. Will it get better ? Any advice ?

Thanks

Natalie M

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

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

<p style=”text-align: left;”>Hello,</p>
<p style=”text-align: left;”>What do you think of home fill oxygen systems? They seem to be a great solution for high-flow users, in terms of unlimited oxygen without having to go through an oxygen provider. But you would lose the provider’s expertise and truly be on your own.… Read more

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

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

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

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… Read more

Dave

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

Natalie

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

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

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

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

 

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

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.… Read more

Hello

I am aware of only three portable oxygen concentrators that deliver up to 3LPM. Are there any that go higher? How do people who need 4 + LPM leave the house? Go to the doctor?

Thanks in advance for any suggestions.
Natalie

Some members have mentioned the Aerofit and other spirometers. Do they do what they claim ? Is it worth the money ? I’m hoping to make some improvement or at least be stable for my next PFT in December. What is your experience ?
Thanks,

Natalie

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… Read more

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

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

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… Read more

Sorry! I meant Anne, not Anna !

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… Read more

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

Margaret,

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

Hello All,

Does anyone take Curcumin? Which brand and how much per day?
I read some recent articles on PubMed that seem promising for us pf patients, and am wondering if I should ask my doctor.
If the topic has already been discussed please send me the links.
Thanks

Natalie

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… Read more

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… Read more

Margaret,
So much for being a rare case! For me, it’s an ongoing story in that the radiation for breast cancer in 1984 (when lumpectomy and radiation first became an option at Vanderbilt university hospital), led to lung cancer in 2009 before my recent diagnosis of  pf. In 2009 the docs wouldn’t say what caused the lung cancer (no risk… Read more

Millie,

Thanks for that very important information. Hope you are doing well.
Natalie

Thank you Joe for the information and link to the article on oxygen toxicity.  It seems like every medication and treatment involves a balance of risk and reward. Right now I’m stepping down off prednisone, and already the pain that was gone for 6 weeks is coming back. The only thing for me without a downside (so far) is exercise. Stay… Read more

Kathleen,

Thanks for sharing this valuable information. It’s good to have a first-hand account, even if it wasn’t successful for you. It really fills in a lot of gaps in the information I have.
Hope you are doing well.
Natalie

Hi Margaret,

Thanks for your reply. My PT therapist underwent the course of hyperbaric therapy after intestinal cancer and found it helpful for the swelling. I still have edema in my breast and arm and that would probably be reduced. So useful for some things but not for others!

Be well,

Natalie

Hello All,

My PT therapist suggested I might benefit from hyperbaric oxygen therapy because my fibrosis was caused by radiation to my chest about 40 years ago. Does anyone have any experience with this therapy or any knowledge of it ?

Thanks

Natalie

Peter,

Thanks so much for this really helpful information. It clarifies some questions I had and will inspire me to do more exercise. So relevant to me today after a  pulmonologist visit yesterday to see how I did after 5 weeks of PR. “Impressed” and “excited” was what he said, a big change from the doom and gloom from early June. So I feel… Read more

Hi Charles,

I so agree with you and I echo your sentiments. It’s great that despite all that, you’re still here!
I’m glad you’re happy with your portable. Can you tell us the brand name ?

Natalie

Hello Everyone

I’ve just finished 6 weeks of PR and was using an oxygen tank. During that time, the therapist gradually lowered the amount from 4 to 3 lpm. I have also steadily increased the exercise routine and I can tell the positive effects of that on my breathing. I still have 6 weeks to go. Is it possible that I can exercise my way off… Read more

Thanks, Christie.
N

Hello Christie,

Thanks for answering. Not sure but I did manage to answer. Is there a limit to #of characters in a reply to a reply? #of replies ? There was one that was pending last night. Sorry if I missed the rules.
This site and especially the forums have been such a help and comfort to me.  I’ve told everyone I know about it, and how… Read more

1. Thanks, I’m glad you found something that works for you.

Sue,

That’s so disappointing. And it’s heavy too, on wheels. Is it also hard to put in the car ? Although with what you have said about the battery, it doesn’t look like it would be good for me.
Thanks and be well.
Natalie

Roger,

I totally share your frustration. It is very tiring to try to educate the people who are supposed to be helping us. But I’m so grateful to you and the members  of the PF forum for all the advice. It really helps.
Natalie

Pattye, thanks for the good advice.
Natalie

Thank you, David. My best to you as well.
Natalie

Thanks Pete. I share your frustration. Doctors, physical therapists and certainly oxygen providers should know better. I’m wondering too if the Medicare reimbursement has something to do with reliance on the smaller, cheaper units. Thanks for suggesting the Eclipse 5. I’ll check it out.
Natalie

Hello

I am trying to reply to the replies that  forum members made to a question I asked. But there is an error message “the message cannot be created at this time.” I must be doing something wrong. Could you please explain how to post a reply. Thanks Natalie

Hello Everyone,

I am on oxygen 24/7 and have a continuous unit in my house on 3 lpm.  I also have a Caire Freestyle Comfort pulse, but even when I set it on 5, my sats fall too low (80-83), with any movement like walking. My provider says it should be enough for me and that I need to breathe more consistently. I did and there’s not too much of… Read more