IPF oxygen

[Looseloafers]

Hi all hope everything is ok with you. My consultant keeps mentioning oxygen therapy but I am resisting! The idea of going out and about with a tank and those things up my nose is horrendous. How do you all cope and can you use it just in the house and go out without it? Cheers Sue

[mikeadams51]

The problem with not using oxygen is that your vital organs will show sign of stress with lack of sufficient oxygen like the brain and heart. It is easy to cope with everyday use of oxygen having the will to live longer and losing the vanity is a great way of carrying on living. Good luck

[BoomBaggy in reply to mikeadams51]

Totally agree Mike I have now been on oxygen for 12 months at 3 ltrs. I still walk the dog twice a day and try to keep active which is helped by oxygen.

[stone-UK]

Hi

One of the issues with IPF is the inability to take up oxygen. Hence the need for oxygen therapy, which with you condition will not only protect major organs but will help with your breathlessness. Which will improve your quality of life.

If the time comes that you need oxygen therapy don’t be concerned it’s only another medicine to take.

There’s several options for you to discuss and decide what you are comfortable with.

Cylinder large/ small comes with bag and trolley.

Liquid oxygen uses a flask with carrying strap.

There’s a portable concentrator, but may not be suitable depending on the setting required, I’ve noticed from other members with IPF that they can up the flow rate if required.

I use Ambulitory oxygen for exercise and out and about, COPD.

I don’t have problem you may get a few looks especially from children but it’s not a major concern. The pros far outweigh the cons.

[gilder60 in reply to stone-UK]

yes im on Ambulatory Oxygen 2 ltrs and find I can walk further and yes children do look and sometimes ask so I say I have a poorly nose I couldent do without it wish I had it along time ago rearly helps with walking shopping etc. xx

[Fleurbaby]

Yes! Definitely swallow your pride, your pride will kill you!

You organs will benefit from oxygen. Take it!!!!!!

[Jomo46]

I can walk further ,exercise more and feel less breathless with oxygen. I started out with small cylinders which gave me 2 hours of oxygen level 2. I am supposed to use it if I walk ( ambulatory). There are a lot of downsides. The cylinders are heavy, getting it on and off twists my back and I pull muscles. Everything takes longer. They changed me to a Inogen portable concentrater which can give me about 7 hours with the 2 batteries they gave me. It comes with a small trolley. Again everything is slower, but more comfortable. If I didn’t have oxygen I would have to use a wheelchair. Walking 12 paces to the toilet makes me really breathless. As regards the things up your nose, the cannula - you’re right, it’s a major emotional leap, but worth it. I have sarcoid pulmonary fibrosis. I collect grandchildren from school and yes the little ones stare. I smile and say I’m training to be a spaceman. After the first few times of going out with it I got used to it. Everyone is very kind to me, hold doors, sometimes they ask if I need any help. It has made me realise how kind people are. They told me it would not help with breathlessness, but I find it reduces it.

All the medics say exercise as much as you can, as then your muscles need less oxygen, and delays deterioration.

I don’t want my heart and brain etc to be damaged by low oxygen levels.

Its a bind, I feel I’m on a dog lead, but it gives me freedom to get out .

It’s worth getting the test done. Usually they ask you to walk 6 minutes while you have a finger monitor on, that gives your oxygen reading. If it goes below about 90, they tryout readings while you carry an oxygen cylinder.

Like everyone so far has said, get over the vanity, you don’t want to damage your vital organs and it does give you more freedom.

Good luck

Joanna

[skischool]

LL or sue,whichever you prefer,you will get bored with everybody telling you it's a no brainer so i reckon to save yourself the agony of us all telling you what to do just give it a try and when it becomes easier to do that walk to the bathroom and you start being able to do all those things that you struggle with now you will be glad you did so and us badgering you will be a thing of the past.

Good luck and give it a go my love,what have you got to lose.

Ski's.Scruff's and several tanks and machines both static and mobile that give me more energy. x

[Hacienda]

Hi Sue, Welcome. I am a Ski 's & Scruffs Fan,, I too felt a little like you 4 years ago. Not Now, I Know the ins & outs of Oxygen, I live a Good life with it, Go shopping, Exercise classes, Rehab & The Gym, Put my Lippy on and Smile, I don't notice "The Things" up my nose, To be truthful No One else notices either, My Other Organs Do , as They are the most Important. Good Luck Hun, Embrace your 02, give it a Nice Name . Hugs Carolina XXX

[Samjeff]

Well I felt the same way hate to be looked at and people do, but after time you don’t notice them and some are kind a lady came up to me in a supermarket and said I really admire you for going in public with oxy her husband it seems to have retreated to his bed. By using it you are protecting your heart, the self consciousness bit does go away its use it or stay home but I do feel for you takes time. Sam

[Phil40]

Hi, I think I understand the decision to use ambulatory oxygen is a hard one. It nearly drove me mad trying to get my Mum to understand the whole situation and what she risked not using it when she most needed it.

I spent a lot of the time shopping or whatever getting ready to catch her when she collapsed which fortunately never happened.

If it’s being advised I would use it having watched her process to acceptance. And I don’t even notice anyone looking or anything, it’s actually very surprising how many people we have met who know someone with COPD and know what you are up against.

Regards

Phil

[Hidden]

I've been using O2 for over a year now & it's made life sooo much easier! You have to measure your priorities - use O2 & live or not

[Catnip]

Greetings.

Can't understand why you would want to struggle when you have been offered an alternative which will make your life easier. Most people don't see the cannula; cylinders can go in a pull-along bag, hidden. Mine is a "granny bag" trolley, to carry several cylinders.

Better to be alive and functioning properly than vain and killing oneself from lack of oxygen.

Cheers

Catnip

[Happydogs4France]

My hubby got his oxygen unit last week, not portable, but he can use it at night, and whenever he needs it during the day. The tube is small, and the cannula ( nose piece ) isn't causing him any problems, which i honestly thought he would totally resist! The unit isn't an oxygen cylinder, here in France they don't use them in the home, it's more like a air con unit, which sits in the hall way, with sufficient tube to go from room to room. It has certainly helped, as he was really struggling!

[goat-lady]

I love the "training to be a space man" comment! I see quite a few folks out and about with Oxygen, esp in the supermarket, and very few people even notice! Give it a go.

[sibkev]

by not wearing it your red cells increase thickening your blood then you are in stroke danger you can cut nose prongs to your liking

[Queenbean]

The oxygen will not become a choice after a while .... but on a side note it’s never to early to be referred for lung transplant, you do sound well enough to walk without oxygen however with ipf that can quickly change ... if it’s something you would consider please advocate for yourself and get assessed ASAP they may well put you on hold if your too well but having all the tests completed early can make all the difference when you need ...!

[micktheknife]

I still feel a little embarassment being out and about with my nose hose - however... Would I swap a little bit of embarrassment for a heart attack? not on your (or my) life.

Take the O2, these consultants generally know what they are talking about.

Do you browse Pulmonary Fibrois ?News, It's a USA site, but has decent info.

pulmonaryfibrosisnews.com/

[Donnabelle]

I think you are going to see more and more folks out in public with their 02 in the coming years. All the baby boomers are getting older and that is the largest population. You don’t need to feel embarrassed.