I’m on CPAP - please help me survive hell

[LittleSpyintheSky]

I’m on CPAP. Everyone is doing their best to keep me alive but I feel traumatised. Family and friends are still asleep. Is anyone there to talk to me?

@AllDoneIn

Good night and sleep well. So glad you are on the mend

Thank you 💐

I wanted to talk about the ladies who died.

To my shame, I had raised my voice at the one who seemed very weak, when I was suffering from sleep deprivation. I thought she was misusing the CPAP so that it was making s lots of noise. It wasn’t CPAP she was on, so my mistake. Anyway, a few days later I tried to apologise to her but she just looked at me. I then realised she couldn’t hear as the batteries in her hearing aid had gone.
They promised to sort it out for her, but they didn’t and she was unable to advocate for herself.
At some stage yesterday, he daughter rang to talk to her but the woman refused the phone as she couldn’t hear anything.
Please just let that sink in for a moment. Her daughter no doubt wanted to say important things to her - how much she loved her, how grateful she was - who knows really. But she couldn’t say them, because her mother couldn’t hear. And all for a couple of sodding batteries.

And now onto the powerhouse that had been lying opposite to me. OMG she was an awesome force of nature when she came in. She was incredibly angry and gave all the nurses and doctors a very hard time. Huge, powerful woman. Fought hard for a few days - argued with them about everything.
Yesterday, I noticed the fight going out of her. She was really struggling with the CPAP and they had to tape the tube out of her way, as she kept pulling at it. She occasionally moved her jaw in a way that stopped it working properly. I recognised that move as I had done it too.
I noticed she had a small dainty foot, tiny in comparison to her, which she flicked in and out. A little bit of control in a situation where there was no control whatsoever.
I can’t believe I watched her and watched her and watched her and didn’t notice she had died.

Rest in peace

That’s so sad for that lady and her daughter.
I’m glad you’re continuing to improve. Have they given any indication of how much longer you might be in?

That’s so sad @LittleSpyintheSky.Heart breaking. May they rest in peace.

@JacobReesMogadishu

That’s so sad for that lady and her daughter. I’m glad you’re continuing to improve. Have they given any indication of how much longer you might be in?

Yes, really sad - and unnecessary.

No indication yet. I was swabbed for COVID yesterday and I need a negative result, but my test doesn’t get prioritised. They’ll be weaning me off the oxygen a bit more today. I would absolutely love to be going home, but I don’t think it will be today, unfortunately.

I’m surprised they are swabbing you. I work in a hospital (though not with covid patients). Staff take lateral flow tests twice a week. If anyone is positive we are told not to swab for 90 days as you can get false positives. So the swab picks up the virus still, but you’re not actually infected or infectious. Maybe it’s different for the pcr tests?

@Benjispruce2

That’s so sad *@LittleSpyintheSky*.Heart breaking. May they rest in peace.

Well, I’m not at all religious - but Amen to that

@JacobReesMogadishu

I’m surprised they are swabbing you. I work in a hospital (though not with covid patients). Staff take lateral flow tests twice a week. If anyone is positive we are told not to swab for 90 days as you can get false positives. So the swab picks up the virus still, but you’re not actually infected or infectious. Maybe it’s different for the pcr tests?

They swabbed me when I was brought in and then again yesterday. I suppose they need to know that I’m clear before I leave here.

That's so sad. I've always taken this illness seriously and I applaud your efforts to try and paint a picture for those who don't.
I'm so relieved you are on the mend. My heart goes out to the family of that poor woman. This is not a drill folks.

I would check with them about that because you don’t want keeping in for 3 months unnecessarily!

That happened to me a couple of years ago admitted to the respiratory ward for 10 days with pneumonia. Every elderly person that came into the ward died, to such an extent that the nurses moved me to a side room after a bit "as you'll be less disturbed". Of course I knew intellectually that in a country our size of course there are tens of thousands who die every week and month, especially in winter, but it's very much out of sight out of mind for most people. I am afraid to say I was too sick to really care or notice at the time but I have thought about it very often since. I hope you are taking care of yourself and hope you get well soon

Glad to hear you are on your way home. I used to be a sister on a respiratory ward and it has brought back such vivid memories for me. Especially of CPAP and trying to keep masks on confused patients. Take care x

Hi OP, I've just read every one of these posts and I'm so happy for your continued recovery, even in your darkest hours you were so eloquent you obviously have an amazing fighting spirit which will serve you well as you continue to recover. Posts like yours are needed to show us all what an awful illness this is and to remind the complacent and doubters amongst us to just play the game. Ffs, just follow the rules to protect the vulnerable, it's not hard is it?
Wishing you all the best for Christmas and enjoy being with your lovely family.

And a massive thank you to our nurses, HCAs, doctors and everyone involved in patient care you are all superstars.

OP, I've just read your harrowing thread & am so pleased that you are improving. It is sobering to understand the impact of years of funding cuts on the NHS, thank you for sharing this. I hope that you continue to improve & can talk to your family. Sending strength & unmumsnetty hugs

@LittleSpyintheSky am glad you are recovering. It must be very traumatic to have witnessed those deaths, keep talking and don’t be afraid to seek help if you need it.
People after a critical care stay have nightmares and distress, do ask for support if you need it

@JacobReesMogadishu

I’m surprised they are swabbing you. I work in a hospital (though not with covid patients). Staff take lateral flow tests twice a week. If anyone is positive we are told not to swab for 90 days as you can get false positives. So the swab picks up the virus still, but you’re not actually infected or infectious. Maybe it’s different for the pcr tests?

Hi Jacob, when I read your post I wanted to shove my fingers in my ears and go lalalalalalala. But I heard one of the docs tell the new woman in the bed next to me that she had tested positive again, but it might just be a kickback from the first test.

They swabbed me properly yesterday and then with one of those rapid tests this morning. What’s the point? They’ve said I can’t go home until I’m clear. Wont a proper blood test be more accurate?

@Xiaoxiong

That happened to me a couple of years ago admitted to the respiratory ward for 10 days with pneumonia. Every elderly person that came into the ward died, to such an extent that the nurses moved me to a side room after a bit "as you'll be less disturbed". Of course I knew intellectually that in a country our size of course there are tens of thousands who die every week and month, especially in winter, but it's very much out of sight out of mind for most people. I am afraid to say I was too sick to really care or notice at the time but I have thought about it very often since. I hope you are taking care of yourself and hope you get well soon

I’m sure they used to call pneumonia the old man’s friend, or something like that. Hard to see how it can be, as it’s such a brutal way to go.

Love lemon curd - is there an easier way for people to pass? CPAP is brutal, but it works for people with a good chance of recovery, but what about when chances are slim to non-existent? I’m wondering whether there is a kinder way of allowing people to pass? Not just for COVID, but generally? Surely, we need to be having these conversations.

Well, I’m here until Sunday or Monday. My oxygen support levels are now very basic, but I need to be doing it on my own.

I wish you all the very best Christmas you can have. 🎶🎶🎶

@LittleSpyintheSky

I’m on the respiratory ward. It sounds like I’m making it up, doesn’t it? I can assure you I am not.

Oh no! I didn't mean that. I once popped down to a ward from ICU (ex-nurse) and a poor nurse had 4 patients in 3 bays on 15 minutes obs and she had one monitoring set. She had phoned to ask if we had a different Sats probe because one of her patients was so shut down that it wasn't registering on her finger.

So, I believe you, sadly, but I was hoping that if you were on optiflow they'd be monitoring you quite closely

"Love lemon curd - is there an easier way for people to pass? CPAP is brutal, but it works for people with a good chance of recovery, but what about when chances are slim to non-existent? I’m wondering whether there is a kinder way of allowing people to pass?"

Where I was, CPAP wouldn't be used if there was no chance of recovery. The patient wouldn't even be accepted for critical care. They would be given symptom-relieving (palliative) treatment.

@Lougle

"Love lemon curd - is there an easier way for people to pass? CPAP is brutal, but it works for people with a good chance of recovery, but what about when chances are slim to non-existent? I’m wondering whether there is a kinder way of allowing people to pass?"

Where I was, CPAP wouldn't be used if there was no chance of recovery. The patient wouldn't even be accepted for critical care. They would be given symptom-relieving (palliative) treatment.

Ah, so they thought she was in with a chance (lady who died). It looked very brutal, but what do I know.

It's unethical to give a treatment which causes suffering without hope of success. That said, different doctors will have their own judgement on the likelihood of success, and if a patient is very strongly in favour of treatment, knowing the likelihood of success is slim, they are more likely to allow a short trial of active treatment than if a patient is ambivalent or against it.

There will always be patients who survive against all odds and patients who die despite seeming like a good candidate for treatment, though. It's the nature of medicine. No crystal balls.

I'd hope to think that you can reassure yourself, though, that every patient is given the best treatment for their circumstances, and that treatment includes excellent palliative care. That's the least every patient deserves.

Ah, so they thought she was in with a chance (lady who died). It looked very brutal, but what do I know.

If there is a bed and a CPAP machine available, you would try and give most people a chance, even those who's chance was slim ?
I have seen people admitted who I genuinely thought wouldn't be coming home and they have and others who you would imagine would be home in no time, who didn't make it. I have seen a few put on a palliative pathway who then survived the virus.
We know a lot more about the virus and how to help people whilst their bodies fight it, but we do not have a cure. Now we have a vaccine we will hopefully see less people needing the sort of treatment you have had to endure.

Merry Christmas LittleSpyintheSky. Wishing you a full recovery soon.

You are right, of course, Frumpety. And one of the ladies had been full of fight. It’s been a humbling experience for me and, to be fair. I’d thought I’d had plenty of humble pie to eat in my life so far. The learning is never done, and I’m grateful for that.

Well, I had the most amazing night’s sleep. What a difference that makes. I can deal with anything now.

Merry Christmas, Ladies. Do have a good day xx

How wonderful that you had a good night's sleep and feel so much better OP.
I wish you a Merry Christmas too - and sincerely hope your recovery goes well and you go home soon.