New info from Royal Brompton consultant + message to 2greys

[O2Trees]

Hi all, had my Brompton consultant appointment last week plus full lung function tests and CT scan. Very happy that my FEV1 has risen from 33% where it was last year when I had the two lots of pneumonia to 37.4%. So small but significant improvement - my FEV1 doesn't waver much so this seems reliable.

BUT: during my time with the consultant, she said that ambulatory oxygen doesnt do anything to extend wellness or mortality. At which point, rather than being shocked, I remembered seeing a research paper posted here, Im pretty sure, by 2greys. Since Im very borderline - e.g. can lift weights easily without oxygen and sats go up, but need it for walking, biking etc - I asked her, well, can I experiment then? To which she replied yes. But a bit disturbing not knowing where this information comes from and hard to argue with a Brompton consultant.

So, 2G - as well as searching for ambulatory oxygen in the search box, Ive been right back through your posts, both up to 2 years ago (what an amazing body of research you have there!). Im sure it was easily within that time but I cant find any post about this. I dont think I imagined it but it could be that ive gone so bug-eyed from too much gazing at the screen and missed it. Please could you let me know if you did post such a paper? My oxygen nurse is concerned about this news and wants to take research evidence to her team's monthly Best Practice meeting. If I cant find evidence I'll get back to the consultant and ask for the reference but thought I'd check with you first. Many thanks.

And hoping everyone is as well as possible. x

[sassy59]

That’s great news re FEV1, I’m pleased to hear that.

Hope you get a reply from 2greys and take care O2. Hugs xxx 🤗

[O2Trees in reply to sassy59]

Hugs backatcha Carole xxx

[sassy59 in reply to O2Trees]

Thank you xxx 😘

[claque]

Hi O2 Trees, I hope you find what you are looking for. If you do I would be grateful if you would post a link to it as I would be very interested in reading it as well

Thanks

[O2Trees in reply to claque]

I just googled for research articles for effectiveness of ambulatory oxygen and this came up:

Effect of ambulatory oxygen on quality of life for patients ... - The Lancet

thelancet.com/journals/lanr...

by D Visca - ‎2018 - ‎Cited by 5 - ‎Related articles

28 Aug 2018 - However, further studies are needed to confirm this finding. ... ambulatory oxygen had no effect on mortality or HRQOL in patients with COPD and ...... TMM has, via his institution, received industry–academic funding from ...

Ive copied the google listing in full as it mentions lack of effect on mortality etc, as when I clicked on it the article was only about ambulatory oxygen for patients with ILD. You have to join to see the whole article but they say it's free for everyone so just tried to and it's blocking me. Whole thing feels a bit of a wind-up. Hey ho!

[Sharp5Flat13 in reply to O2Trees]

Copied from the above link.

HRQOL (Health-Related Quality of Life)

Interpretation

Ambulatory oxygen seemed to be associated with improved HRQOL in patients with interstitial lung disease with isolated exertional hypoxia and could be an effective intervention in this patient group, who have few therapeutic options. However, further studies are needed to confirm this finding.

Funding

UK National Institute for Health Research.

[skischool]

Jean,I thought it was pretty common knowledge that any form of oxygen therapy be it long term or ambulatory won't increase mortality and wellness but that it will save oxygen depleted patients vital organs from potential damage.maybe that is what your consultant is trying to say.

Congratulations on increasing your Fev1 baseline,you are obviously doing something right in terms of exercise and diet and do keep us posted on your 'experiment'.

Love Ski's and Scruff's xx

p.s the reverse seems to be a problem in that over use will do harm to the body as per this article.

discover.dc.nihr.ac.uk/cont...

[O2Trees in reply to skischool]

Hi Skis - but if, as we believe, ambulatory oxygen protects major organs from damage, then surely that must help with mortality. Or to put it the other way round, if your major organs are screwed from lack of oxygen, wouldnt that negatively effect your mortality?

And she seemed perfectly happy for me not to use it?! Which she surely wouldnt have been if my heart etc would suffer from oxygen deprivation.

Im not getting it and would like to know more. You take care Skis xx

[skischool in reply to O2Trees]

Could it be that she is happy with your blood oxygen levels on exertion and have they been measured during exertion?breathlessness and low spo2 readings from our trusty or non trusty oximeters only tells half the story and as you know we can have both but if our blood levels are ok we are not damaging our vital organs or better still can we all chuck away the aids and rise up in true Lazarus style. x

[O2Trees in reply to skischool]

Hahaha! How lovely that would be. But she doesnt know my blood oxygen levels on exertion. I'll ask my oxygen nurse about that though, cheers.

[O2Trees in reply to skischool]

Just read the p.s. on your first reply and that's definitely right. Too much can cause CO2 retention. I had this when I had type 2 respiratory failure in hospital a year ago. My O2 sats had to be kept between 88 and 92% - now more - and this is the range ambulance paramedics are instructed to use when they give oxygen to people with copd, though not with other patients.

[stone-UK]

Hi

One article

discover.dc.nihr.ac.uk/cont...

Two article

nursingtimes.net/download?a...

Third article

copd.net/clinical/home-oxyg...

The lancet required $31

[O2Trees]

Many thanks Stone

[Hidden]

healthunlocked.com/blf/post...

[O2Trees in reply to Hidden]

Thanks Don

[2greys]

A big ask to remember a specific post from 1,200 odd research posts, but I do think you are correct and may be one of these links:

cardiopt.org/pdf/pubs/Suppl...

rebelem.com/is-too-much-sup...

bmj.com/content/363/bmj.k4169

Incidentally, I had a spirometry test yesterday and have to wait for an interpretation/result from my doctor. Last year I had an FEV1% of 31 (hospital test in a booth), yesterday 10 mins after a 1 mile uphill walk I scored an spo2 of 97% whilst still slightly SOB, an excellent result in my book even given the amount of exercise that I do.

[O2Trees in reply to 2greys]

Wow, well done that man, and thanks for the links 2G.

I know it was a big ask which was why I spent so long trying to find it to avoid having to ask you. Anyway I'll go through these ones so cheers.

[stamford1234 in reply to 2greys]

That is really good 2greys. You must be delighted. Maybe all those meds we take are having a better effect than we thought. I am really pleased for you

[Hacienda]

Hi Hun, I won't be reading all the Links makes me bog eyed and I don't believe all they say.. I rely on both Oxygen's, Converter and Mobile. I have yet again my Oxygen Nurses coming Tomorrow to assess the high Carbon Dioxide from my last assessment 3 weeks ago. I live each day as it happens to all my Strengths and Achievements , Whether Oxygen allows me to live each day is a Positive for me. so therefore , I live longer, Your FEV 1 increase is Good now, so Congratulations Hun. Mine at the last Spiro Testing was 26%. Once my "Bling" has been sorted and Passed, I will be even more Happy, knowing I'll hopefully live Longer. I aim to enjoy every day as it Happens. I'm a Glass half Full Type of Gal. Love n Hugs. xxxxx

[O2Trees in reply to Hacienda]

Great philosophy Carolina - way to go! xxx

Oh and good luck with tomorrow's test.

[Caspiana]

Hi Jean,

First and foremost yay!!! 👏 So glad your FEV1 has risen, any rise however small is marvellous. 😊

Re: Brompton consultant... HA! I don't know her sources or concrete statistical analysis on the matter BUT I know, I for one would be stuck indoors and unable to walk as much without O2. And aren't they (doctors) always telling us that physical exercise leads to better breathing? I think many supplementary oxygen users would agree, we are more active and sometimes able to be more sociable because we have the support of our O2. Being active leads us to a better mental state I think. I'm sure she's very knowledgeable and fantastic in her field, but I also think making such a comment is quite unhelpful and totally unnecessary seeing as we don't have a whole lot of option but to be on 02. 😡

I hope you have a lovely week!

*HUGS*

Cas xx 🙋🐕

[O2Trees in reply to Caspiana]

Thanks so much Cas - my partner Rita says its a very constructive answer and I agree. It's left me in a bit of a spin and folks here have been very kind with links to various research papers and articles. Tbh I liked the consultant I saw the previous appointment much better - this one seemed to have the attitude, well you're coping ok, and she didnt seem to want to discuss my questions much - e.g. heart rate rising to 145 when I walk. "Yes, that's normal."

My oxygen nurse wants to know more and when the consultant's (copy) letter to my doctor gets to me Im going to write to her and ask her for the evidence. It's kind of faded into the background today though as Ive just had scan report saying I may have cirrhosis - and I dont even drink, but have an iron condition which can cause it. Never mind, we're all struggling together. I really appreciate your reply Cas and hope you are ok at the moment, or as ok as possible. Im not on here quite as much and sometimes lose track so not sure where you are in relation to the transplant etc. But glad your oxygen makes life liveable

Love to you and Chom xxx

[Caspiana in reply to O2Trees]

Hi Jean. 👋

Any consultant that dismisses your queries with a flippant "Well, that's normal" or " Well, you're doing okay, " probably has that attitude to their whole scope of practice. So her comment re: oxygen is not so astonishing I think. 😐 I prefer your other consultant too and I've never even met them. 😁 I'm sorry to hear about your potential cirrhosis issues. I really hope it's not so. I am still waiting for my surgery ,but hanging in there. If I could have more energy I would be doing better I think. Take good care. xx 🙋🌷

[O2Trees in reply to Caspiana]

You too Cas - we all struggle on and support each other, so much the better for that. Big love, jean xxx

[Whitechinchilla]

Wonderful news iro your FEV O2. Well done.😉

[O2Trees in reply to Whitechinchilla]

Thanks so much Whitechinchilla

[challny]

As some of you may know I have really been struggling with sciatic pain for the last two months, and I mean really struggling. It has been horrible, and no amount of medication has given me any relief. But on one visit to my PC, my 02 reading with the finger thing was 99 percent. That gave me more relief than any pain meds. My 02 readings are always pretty decent, but 99 percent, I don't see that too often.

[O2Trees in reply to challny]

Wow - wonderful for you challny.

[O2Trees]

It must be aiding mortality, mustn't it? Thanks RedSox xx