No Oxygen and extremely bad breathing

[Christie Patient]

Hi Vincent @vin1941,
So sorry to hear that your mom is suffering and that you hadn’t known about her diagnosis previously. It sounds like she would certainly benefit from oxygen use at home. I am in the US, so I’m not too sure how it works in the UK (maybe another UK forum member can chime in?) but supplemental oxygen usually requires a prescription from a doctor. I am surprised that the docs that treated her recently did not take that into their own hands, or recommend further visits. I would not delay–having been in a similar position as a caregiver–getting her an appointment with a pulmonologist as soon as possible. Things can get scary pretty fast when the patient is unable to get enough oxygen to move around well on their own.

I know that anxiety and agoraphobia might complicate this for you, but reassure her that having oxygen (and possibly other treatments) will allow her to breathe more comfortably, move around her home more independently, and feel a lot better overall. Breathlessness and anxiety do not mix well, so using oxygen will likely help with both.

Pulmonary rehabilitation might also prove useful, along with medications to help slow the progression of the disease. It sounds like she is in pretty dire need of oxygen, at least, but only a doctor can make further assessment of her condition.

I will do a little research on getting oxygen in the UK/see if I can find a forum user who has experience with this and report back in the next few days. In the meantime, I suggest you reach out to her doctor and get the ball rolling for a check-up.

Wishing you luck,
Christie

[Bernard Reid]

Hi,  I’m in the UK and the usual course to obtaining oxygen is through a family doctor.  He is the ‘Keyholder’.  It should not be a problem,  she will need to be assessed first probably.  It should all be done very quickly.  There is a National Health Service telephone number here in the UK for non-urgent medical help – 111. If you call that number they will provide you with a course of action.  All medical treatment including oxygen  is free here in the UK.  Hope this helps.

Cheers and God bless.

Bernard,  Lincoln, England.

[Vincent O'Hare]

Thanks for all the reply’s

mum got seen by a paramedic this morning via the gp and was immediately given oxygen. Her levels were down to 75% (I don’t actually know if that is dangerously low or not )

She was then taken to hospital where she still is at the moment . The paramedic says she should have oxygen at home but I checked with GP surgery and nothing has been actioned yet .

We are worried that she will be discharged again with still no oxygen at home .

 

[Ben Robinson]

Alert!!    75% is extremely low and quite dangerous.  I am not sure how she is getting along a all at that level.  I can’t imagine any doctor releasing her without oxygen waiting and also portable oxygen.  I had to buy in home concentrators on line- a Millennium M 10 and a Sequal Eclipse 5 myself.  Best of Luck to you!

[Vincent O'Hare]

Thanks Ben

Mum is now stable in hospital and is in overnight . She has responded well to the oxygen and is also getting antibiotics for a potential infection. My sister has gone home for a breather and my other sister and I will contact her ward and the gp to press harder to ensure she isn’t discharged without it.

It actually feels like tonight we can take a breather as for the first time in ages she is stable.

Ben are you in the Uk ?
I know there is a difference between what is available on the NHS to patients and what may be available privately in The states .
We are happy to purchase things that will make her more comfortable though if the need arises .

[Christie Patient]

Thanks @bernardreid121gmail-com for UK-based knowledge.

@vin1941 I am glad she is staying for a while and responding well to those treatments. I would not let them discharge her without portable O2 and plan to get the treatment going full-time at home. Make sure they know that she has IPF and that it’s progressive. If they aren’t aware of how the disease works, they might think “oh good we got her levels up, that’s it, it’s safe to send her home now”. Any relief she has in hospital will be temporary without ongoing support.

Keep us posted.

[Paul Polidano]

Hi – A big thanks to all who posted these blogs on this very important – but often neglected subject.

With myself being diagnosed with IPF in Jan 2020 – but thankfully not yet needing Oxygen, having often read that other IPF patients are having to use supplementary oxygen to get on with their life, as well as knowing that this will, most likely be my fate sometime later in life (hopefully with the grace of God – much later), I have often wondered how do IPF patients start on oxygen.

Having read these helpful blogs it somewhat eases my mind to know what to expect, when the time comes for me to transition to using oxygen.

Regards to all  – from Downunder.

[Charlene Marshall]

Hi Paul,

Thanks for sharing your thoughts and kind comments on how the posts on this forum have been helpful to you. That is what we strive for, and I truly believe we have the most amazing, helpful and generous people on this site, but of course I am bias 😉 .

I will also keep my fingers crossed for you that you don’t need 02 for a long time! Take good care and check back to this site often, lots of good information posted here.
Char.

[Ron]

Based on what I have read here in the forums and what my own doctors have told me, the consensus seems to be that if the oxygen saturation measured with a pulse oximeter is in the 90%-100% range there is no need for oxygen supplication. Anything below that (my pulmonologist said 88%) then getting supplemental  O2 is advised.  However, there are variables to consider. For instance, some people may be in the 90%s while resting, but the percentage may drop precipitously with only minor exertion. On the other hand, there are others who can climb a flight of stairs with a basket of laundry and keep normal O2 saturation but rapidly lose that saturation at the top of the stairs when they start to slow their breathing. There is the possibility that someone with normal daytime levels without supplication will breathe so lightly in their sleep that oxygen is needed at night. That is my case.

Vincent, I highly recommend you obtain one of those pulse oximeters and have your mum’s levels checked regularly by her caregivers after she is provided with oxygen. The device is small, battery-operated, and clamps lightly on a finger. You press a button to activate it and it will display the results, usually in less than a minute. It will shut off automatically after a few seconds to conserve the battery power. The device costs roughly $25 USD so it’s pretty cheap. There are numerous brands on Amazon. I like the Innova branded models, but most do a good job for the price.

As for home oxygen, there are electric oxygen generators. These will provide a constant adjustable flow of oxygen thru tubing to a mask or cannula. Some generators have provisions for refilling small oxygen tanks for her to use when she leaves the house.

Here in the US most health insurance companies cover the cost. We have medical supply companies who will deliver the equipment, oxygen bottles, etc. upon receipt of doctor’s orders and insurance approval. The process may be different in the UK but the doctors or their staff can explain how it works.

[Jofac O'Handlin]

Dear Vincent, Another O’H here. I am in the Isle of Man, where our NHS parallels but not the same as that of the UK. Once the hospital triggered the need for O2 following a failed 6 minute walk test, I was overwhelmed with the response. The GP orthorised the prescription, a local pharmacy attended me at home to check the living environment and tutor me on the use of the equipment. The local depot then delivered a surprising number of cylinders, 3 large and 2 lightweight portable. The idea one large for the downstairs living roon, and one upstairs by the bed. The portables to allow some walking activity, and travel (when it was permitted).

Since then they replaced 2 of the large cylinders with concentrators, leaving one for power cut emergencies, and still with the 2 lightweight portables. Replacement cylinders are available on same day, if ordered before 10 am, otherwise 24 hr delivery.

All this free of cost (other than taxation) on the NHS.

Your Trust may / will have different arrangements, but I would hope that they are equal or even better than ours.

As I type my finger Oxometer is indicating 92 in a sedentary (sitting for some time) situation, without O2. Any exertion will drop this into the middle or low 80’s. So oxyygen necessary.

My GP says that low O2 levels, below say 92 are detrimental to the body at large and especially the large organs, and recommends keeping above 96. I perk up the levels several times a day, after exertion, with or after meals (eating and digestion demand effort thus O2) before sleeping and on waking.

The cheap Oxometers are readily, available on line, (anything from £5.00 up to £25) may not be particularly accurate to a couple of % points. I have just bought a second and get a variation of 2% between them. My first one I have had checked against those at the GP’s and was close to their  machines which are supposed to be recalibrated weekly.

Two quick items to conclude.

1. My sister 11 years my senior died from IPF.  She was on private medical care, (also on tne Island) never got fed into tne NHS system, never prescribed home oxygen. Would it have protected her?

2. A friend a few years older is in my situation. He has bought a battery powered portable concentrator (several £1000) to enable him freedom to get exercise and travel.

I am also 79,  diagnosed 7.5 years ago. Did not tell my family for 6 years until the symptoms were likely to become apparant.

Hope this helps.

Regards,

Joe O’Hanlon

[David Swain]

Hello Vincent,

I’m really sorry to here about your Mum and her experience with getting treatment and oxygen. I’m in the UK and have IPF and am on oxygen. As IPF is supposed to be a rare disease, knowledge and treatment has been centred on certain hospitals as “Centres of Excellence” for Interstitial Lung Disease patients (including IPF).  I’m fortunate that my local hospital where I was diagnosed is a Centre of Excellence, and that’s where I’ve been monitored and treated. They have provided ESBRIET medication, liaised with my GP and together arranged every possible help for me including a hospital raisable type bed, district nurse visits and oxygen, both in the home and refillable tanks for when I go out. All provided by the NHS with no charge. I cannot speak too highly of how I’ve been treated.

If there is a Centre of Excellence near you, may I suggest you try and get your Mom transferred there, as they will have the knowledge to give the best and most appropriate treatment – including oxygen.

All the best Vincent. I hope you find the right doctors to look after you Mom.

[Vincent O'Hare]

Hi David

thanks so much for taking the time to reply.

Its amazing how so many people suffering from this terrible disease are so prepared to give their time despite there own sufferings to help out .
Today we have had the doctors surgery say speak to the hospital. We can only hope that the hospital will come through for mum.
I will look into the nearest centre of excellence .
thanks again

 

vince

[Vincent O'Hare]

Thanks Joe O’H

thats really helpfull info regarding the O2 levels .
I think we are realising that if the GP says when your in the hospital it is the hospital’s responsibility to ensure things are in place so you are safe when you are discharged then the hospital was wrong letting mum leave a week ago without oxygen assessment carried out.
hopefully they will perform better this time round .
Mum is definitely in hospital til at least Monday so we can assess the situation again then .

 

[Vincent O'Hare]

Thanks Ron

I agree regarding the meters I’m off to order one up now !

[Marianne]

Vince –

Sounds like your mum is getting the care and oxygen she needs.  I am in the US and having trouble getting the supplemental oxygen my pulmonary doctor prescribed.  It was prescribed March 5.  Apparently, there was some confusion as to what paperwork was needed.  The paperwork has down been sorted.  The oxygen supplier is waiting for verification from their company whether they approve or deny the type oxygen the doctor prescribed.  I do not yet need oxygen 24/7.  My doctor wants me to have portable oxygen concentrator, small refillable gas cylinders a nd a  machine to refill my own tanks.  I currently have 1 large tank on a pull behind cart.  I am to use oxygen on exertion – at gym and on long walks.  Also dealing with Medicare as well as supplemental insurance.  I realize this is an entirely different situation with folks across the pond.

Marianne

[Sam Gilmore]

Sorry to hear about your mom . I am dealing with the oxygen too I am on it 24-7 even then I get breathless. Your Doc will need to prescribe oxygen for you they have suppliers that they go through. Hope that helps

[Ben Robinson]

Vincent- no i am in the USA and not familiar with the UK Market for Concentrators.  Good advice to get a finger oximeter from the others.  sounds like you may need a stationary unit for home use that puts out up to 10 lpm continuous flow- the Millenium company makes a good one here.  You will also need a portable unit that puts out 6 to 9 lpm pulse such a the Innogen G6 more portable 6 lbs or the Sequal V by caire- 18 pound cart.  Your insurance may otherwise cover oxygen delivered to your home and will have a portable. 85 is your benchmark oxygen anything lower is not good anything below 80 is very bad over periods of any length.. Special danger alert on that.  Good luck with everything. God Bless.