Let’s talk about supplemental oxygen

[Dub Karriker]

I don’t have a question, but a recommendation. I was diagnosed almost 5 years ago and have mostly done well. I take Esbriet and the progression has been slow until recently. So far, I have used Boost oxygen as a supplement. I discovered it on a trip out West at altitude and found it helped. I have recently experienced an acute exacerbation of the IPF and at some point will need more consistent oxygen. But so far I have found Boost oxygen to be very helpful when I need to recover from activity quickly. Hope that helps.

[Mack]

I’m using Boost Oxygen when I play golf and it seems to help so far.

Mack

[Peg]

So glad you are adding oxygen sub-forum. I wish we had this 2 1/2 years ago when I first started using oxygen. It would be great if we could use this to give each other hints and help on issues we have with oxygen use. Ideas – your favorite tubing and cannula and where you get them. Supply company you use and is it good or bad. How you deal with getting to dr. appointments with oxygen. How often you change tubing and cannula. Help with nose soreness, etc. You learn so much more from users than from doctors.

Look forward to hearing lots of helpful advice.

Peg

[lku]

Peg, i have used Vitality Medical online fir several years for all my supplies. My wife prefers the Hudson brand cannulas because they are “softer”. I use Salter brand. They are 70-80 cents each when you buy in bulk, so changing frequency is not a big ticket item.

I bought two wheeled POCs from them when insurance did not provide. Vitality also has allthe filters, tubing, fittings, and humidifiers for most brands. Easy to use and very helpful

[David Reno]

I have been using o2 for over a year at night 3lt. I change tubing around 2 wks. I change cannula every wk. I get My supplies from the VA There are great. I also use o2 when active I use the small pony bottle. That can be a pain in ### .I hate this disease not just for what it is doing to Me, what it does to My wife and family They see Me slowing down, They try hide the pain They feel, that is hard on Me.

My best to All

ONRE

[Steve Dragoo]

I’ve been looking for a reasonably priced continuous flow POC up to 4L. Any insights? Thanks…

[Peg]

POCs are not continuous flow and only go up to 1.5 ltrs. The numbers on the machines do not correspond to liters.

[Steve Dragoo]

Hi – there are a couple that offer genuine continuous flow but hard to find…

[Samuel Kirton]

Steve,

I have lost track of where in the world you are at the moment. The ones that will do continuous flow and are portable are quite heavy. They are only “portable” because they have wheels.

Sam…

[john sliwinski]

My biggest fear is telling my pulmonologist that I get SOB and fear that she will put me on O2. However, I use Boost and find it help. I know some day I will need O2 but not now since my SOB is not in a critical stage just minor and I recover quickly with Boost. I encourage people to go to Boost’s website because at time they have good offers or use Amazon too. I am thrilled that we now have a n O2 forum.

[Peg]

Just make sure to use an oximeter to check your oxygen level and keep it in the 90’s so you don’t damage your heart or lungs. If you need oxygen it will make you feel so much better to use it before you cause more issues.

Peg

[Samuel Kirton]

Hi John. Can I ask why you fear being prescribed oxygen?

[john sliwinski]

Basically I do NOT want to wear any cannula and carry around an O2 pack. If things get worse then I will do it but not now since I am not at that point.

[Samuel Kirton]

Thanks for responding. It is my experience that there is no correlation between shortness of breath and oxygen saturation. Saturation levels will drive the need for oxygen. If you have a pulse oximeter check you oxygen saturation when you experience a SOB. If it is below 88% you should be sharing that with your care team.

Your care team may prescribe pulmonary rehabilitation for SOB. When I first went to pulmonary rehab they told me they would teach me to breathe again. I laughed but they were correct.

Sam …

[Larry70]

John, what samuel-kirton is saying is totally correct. I also suggest you find a high quality pulse oximeter, especially one that does well measuring with activity. I use the Masimo MightySat oximeter. It is essentially the same as the medical-grade ones used in the hospital and seems to work well with exercise. It also connect via bluetooth to a smart phone so you can get a reading when outside and such. It is a little expensive, as are the other better quality ones. But it is an essential device for someone with PF. I got mine new on ebay for much cheaper ( 180.00 – normally 250.00) than you’ll find on their website or Amazon.
I felt the same way as you about not wanting to wear O2 out in public but I’m starting to get used to it and isn’t such a big deal. I only need it for going on walks with my dog around the neighborhood and moderate walks up hills and such. If you can, you could ask your pulmonologist to get an exercise treadmill oximeter test – which can determine how much oxygen (or if you need it at all) you need with exercise. The exercise is critical part of helping improve your cardio-vascular conditioning so that you can better get oxygen to your organs and such – also keeping your oxygen level up will help prevent getting pulmonary hypertension – (common complication of people with pulmonary fibrosis)
Good luck!