Sats low during flight + CFTR variant unknown significance

[saltyskies]

So I’ve been on this forum under a different name before. Currently (still) waiting to see my new respiratory team for long-standing lung issues that aren’t asthma, having had a number of tests (but not bronchoscopy). Recently took a few flights and used my pulse oximeter to track my oxygen saturation during two of them, after noticing in the first one that I would feel *really* sleepy and a bit tight in the chest once we had reached cruising altitude, and have a headache once I woke up from sleeping the whole flight ✈️ The second trip wasn’t too bad, my usual sats sit around 98% so during that flight the average was 91-94% with a couple of dips below 90%. But the first of the two flights where I was tracking this, I had to change the alarm on my pulse oximeter because it was going off almost continually at <89%. Even when I’m quite ill with my lungs I don’t usually go below 96%.

I also noticed on my 23andme (of all places) a couple of variants of unknown significance in the CFTR gene that I recognise from my brief stint in biomedical sciences. They’re still of unknown clinical significance and they’re just quite rare so there isn’t much interest in them, but is there any point mentioning them to the respiratory team when I see them? My sister has one deltaF508 from my dad’s side which I didn’t get (thankfully) and she’s asymptomatic but both of us may have some auto inflammatory condition(s).

Mostly though I just need respiratory to hurry up and see me so they can write a letter to the MCA saying they don’t think I need to be restricted to ´UK coastal waters only’..it’s so so frustrating in your early 20s missing deadline after deadline for progressing your career simply because you’ve got to get *one* more letter to start the appeal.

[PaulineHM]

Hi saltyskies,

Not sure about the point you have made about sats dropping in flight ? Cabin pressure affects the 02 level for everyone. If I remember correctly short haul is worse than long haul.

Have you ever had a hypoxic challenge test for 02 levels when flying ?

Carpe Diem.

[saltyskies in reply to PaulineHM]

I haven’t had the challenge test yet. 02 levels can decrease for anyone in flight but the information I have from aviation and medical professionals is that oxygen levels lower than 93% at cruising altitude on a short haul flight is abnormal. It’s all just a bit of a pain because I’m trying to prove to the Maritime and Coastguards Agency that there’s no need for me to be restricted medically and this isn’t necessarily an issue but it’s also not exactly helping 😭

[PaulineHM in reply to saltyskies]

Since I first required oxygen therapy in 2016 and had a hypoxic challenge test I have been required to fly with oxygen. So I flew with a POC U.K. to US etc and some flights to Europe.from U.K. I last flew to Spain with a POC 2020…it just wasn’t enough to compensate for 02 levels in the cabin with the pressure.

Now I am on continuous flow, resting 02 on air 90-91. I can’t see me flying again.

I wonder if unless you have a hypoxic challenge to determine if you need 02 or not when flying, will you get insurance cover ?

Be well.

[saltyskies in reply to PaulineHM]

that’s a good point about insurance, I’ve been a bit too lax with Medical cover while I’ve been travelling! It nearly bit me firmly in the butt when I got into trouble in the water and had to get checked out at the hospital. Need to sort that. Certainly for flying I feel I wouldn’t get cover without a Fit To Fly test given this.

Sorry about your oxygen situation. I know we take what life gives but that sucks. Are you interested in travelling by water at all?

[PaulineHM in reply to saltyskies]

A wise choice to sort your travel insurance ….

I really miss travelling however, at the moment I can only manage one spontaneous night away from home using LOX. I can arrange LOX to be delivered to any arranged accommodation in U.K. That needs lots of pre arranging and have to go through my local NHS oxygen service.

Outside the U.K. is something else!!! I would be prepared to drive to Spain, which I have done before with my own POC, although again LOX looks possible but getting from home to destination with LOX is really tricky! Not sure if that is possible.

Look after your lungs.

Happy New Year.

[saltyskies in reply to PaulineHM]

If you’re interested at all there’s an organisation called the Jubilee Sailing Trust, that specialise in taking disabled people on their tall ship, a lovely large three masted thing. I know people involved with them and could try and find out whether they can take people on supplemental oxygen but they routinely take people with all sorts of medical needs!

It’s UK based but it’s a whole other holiday experience if it’s something you would be interested in!

[Alberta56 in reply to saltyskies]

A wheelchair bound friend of mine went on one of their jaunts and loved it. They hoisted her up one of the masts in her wheelchair.

[PaulineHM in reply to saltyskies]

Hi there, thank you for your kind offer of gathering info re sailing for the disabled. Not sure the oxygen equipment would survive the salty air/water and not sure I would either. There is still much I can do independently but managing that would be a real challenge.

Happy New Year,

Be well.

[anng18]

Hi Salty,

People with 'normal' lungs, oxygen levels go to about 93 on a flight. Your oxygen really didn't seem that bad. I had a horrible experience last summer - mine went down, very briefly to 69, when the aeroplane crossed over the Alps. Having said this, I thought the pressurised air in the cabin was meant to be stable, but not according to my oxygen levels that climbed up a bit when the aeroplane started flying at a lower altitude. Am I put of air travel - definitely 'yes', but my lungs are in very bad condition and most people are ok!

[Tykelady in reply to anng18]

I have to agree with you about the condition of the lungs in the first place. I have never flown since my condition deteriorated and as I require oxygen 24/7 I doubt I will. My resting levels never go above 93.

[saltyskies in reply to anng18]

Where did you get this information? I’m not saying you’re wrong! Just that the information I’ve had from medical professionals and aviation medics suggests that oxygen saturation routinely below 93% during flight is a problem particularly when accompanied by any symptoms of low oxygen. Yes, you’re right, cabin pressure can vary in-flight (particularly when climbing and descending) as well as to an extent between models of aircraft. My lungs are in decent condition but I’m trying to get my seafarers medical all sorted and it’s such a pain in the metaphorical tits

[PaulineHM in reply to anng18]

I know how you feel ! I too have had a rough flight with low sats despite using my POC! No more flying for me now on 02 continuous flow!

[Alberta56]

Best wishes. Hope you get this sorted soon.

[saltyskies in reply to Alberta56]

thank you Alberta!

[Ern007]

02 Level drop in a cabin while flying, I did same as you tested while in the air, after that I did not bother as no new negative effects.

When I lay in bed, why sat,s drop - Could be 94 when I am sat up, can drop to 90 just - I just wonder how accurate oximeters really are.