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Original poster

I’m on CPAP - please help me survive hell

439 replies

LittleSpyintheSky · 19/12/2020 05:43

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?

OP posts:
Lougle · 22/12/2020 22:15

Oh I'm so pleased for you! Optiflow is so much more comfortable and flexible, too.

Original poster
LittleSpyintheSky · 22/12/2020 22:32

I want to tell you something that is happening in here which is truly shocking. The medical staff are literally taking monitoring equipment from the side of beds to use elsewhere, and it doesn’t come back. Someone took my monitoring equipment. Took the probe off my finger and never came back with it. My nurses don’t know who took it or where it is. They don’t have enough equipment and a lot of it is now failing to work.

They were going to let me sleep with no monitoring equipment, just checking me over every hour. Hell no! I kicked up a fuss, asked to see the big cheese. There is no one advocating for me here but myself.

Anyway, I now have a monitor.

Boris, are you bloody well reading this. Did you have have the right equipment when you were ill? What the heck have we allowed to happen?

OP posts:
Lougle · 22/12/2020 22:36

Wow, what sort of ward are you on?

Original poster
LittleSpyintheSky · 22/12/2020 22:39

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

OP posts:
idontknowaboutmortgages · 23/12/2020 00:22

@LittleSpyintheSky delurking to send you best wishes

uncomfortablydumb53 · 23/12/2020 01:08

I'm so happy to read of your progress
I'm sure the nasal prongs are more comfortable and I hope you can get a better nights sleepThanks

myhobbyisouting · 23/12/2020 01:19

Sending you good wishes. Hope you get better very soon

whataballbag · 23/12/2020 02:33

Hope you're sound asleep now having a very boring and uneventful night 🥰

frumpety · 23/12/2020 06:45

LittleSpyintheSky I believe you about the equipment, the case of the disappearing dinamap was a regular occurence, as was constantly finding them abandoned and not plugged in, so their batteries had gone flat ! Hmm
So glad to hear you are off the CPAP and only needing the nasal oxygen. Have you seen a physio yet ?
Do you have an over the bath shower or a walk in one for when you get home ? A downstairs toilet ? People find the stairs a bit of a struggle sometimes when they first get home, do you have handrails ?
Also extra pillows are useful for sleeping a bit propped up in your own bed, can you pinch some off another bed or send DH out to get some ?
Hopefully only a few more days and you can escape Flowers

Original poster
LittleSpyintheSky · 23/12/2020 06:59

Are you a HCW frumpety? I’ve been really shocked to the core about it.

Thank you for all of your suggestions. We are very well set up at home - I would say we are on the privileged side and I’m very well aware that others will have it much tougher. I have DH and 3 adult kids who will be waiting on me when I get home.

I have seen a physio twice and I’m hoping to start pushing with that today. I do want rid of needing the commode!

Thank you everyone for all of your good wishes xx

OP posts:
frumpety · 23/12/2020 07:09

@LittleSpyintheSky yes !

Glad I didn't offend you with my questions and suggestions Smile

If they offer you a frame to use when walking, don't be offended, they are a great way of offering a bit of stability and support, whilst your legs remember what they are for and it will mean you can get rid of the commode Wink

Skipsurvey · 23/12/2020 07:21

i remember a nurse telling me how they didnt have enough commodes, a ward full of ladies all needing a wee first thing in the morning. quite awful

PinkPlantCase · 23/12/2020 07:21

Well done for advocating for yourself OP!!

Benjispruce2 · 23/12/2020 08:17

Wow @LittleSpyintheSky now this is the thread The Daily Mail need to publish!!!
Can’t believe that about equipment. So pleased you spoke up but what about those that don’t???

FuzzyPuffling · 23/12/2020 08:41

I'm so pleased to hear that you are off the CPAP, LittleSpy and on the up. Also sort of glad to hear you are really tired ( that sounds odd!) because that feels like it's a completely normal reaction to it all. Much sleep and rest for you today!

Sirzy · 23/12/2020 08:44

Sadly I can believe that about the equipment it has been bad enough when DS has been in in the past so I can well imagine how much worse it must be now.

Glad your on the mend

MistleTOEboughski · 23/12/2020 08:46

Glad you are getting better OP, but it's worrying to hear about the monitoring equipment situation and the commodes!

sashh · 23/12/2020 08:47

Glad things are going in the right direction.

If you want to continue monitoring at home pulse oximeters are not expensive, possibly not as good as the hospital ones but good enough to give you an idea of your ox saturation.

I used to teach health and social care so have one, plus BP and thermometer.

One thing I suggest is a teddy bear, no I'm not crazy, when you are trying to sleep or need to cough hugging a teddy bear (or pillow) can help. But for sleep if you get pillows behind you and hug the teddy you can fall asleep using the head as a pillow in front.

Original poster
LittleSpyintheSky · 23/12/2020 09:07

Thank you everyone.

Sashh- I have an oxymeter here with me. It was because I had one at home with me that I knew I was suffering from creeping hypoxia. I have a good ear thermometer too, so knew I was in trouble.

Everyone should have both of these at home.

I like the idea of a teddy. DD has enough to stuff a toy shop 😂

OP posts:
mrshonda · 23/12/2020 20:11

Have you had a good day LittleSpy? x

SecretNutellaFix · 23/12/2020 22:06

Hi littlespy.I am so glad that things are getting more positive for you.

You are not alone in the "you couldn't bloody make it up" department. Communication from the hospital where DH is has been rather poor.

Sunday evening, I get a phone call from his nurse to tell me that he'd got up from the bed in the afternoon to go to the loo, and as he went around the corner of his bed his blood pressure dropped and so did he, in front of the staff. He only went and broke his bloody hip.

So we now have different issues to deal with on top of the everything previous. Never rains, but it pours, eh?

Hope you continue improving as well as you seem to be doing.

Original poster
LittleSpyintheSky · 23/12/2020 22:28

SecretNutellaFix - your poor husband! He/you really don’t need that on top of everything. I have been concerned about dizziness when I’ve been up and about today - but someone has been keeping an eye on me not just letting me get on with it unsupported. I hope he makes a full recovery.

I don’t know what to say about the wards really - I’ve probably said far too much. The staff are working very hard, and have endless resources of care and patience. I don’t want to criticise them at all. But the kit issue worries me greatly. And you do need to advocate for yourself whilst you are in here. And not everyone can do that. I was told not to let anyone take my monitoring kit - in the night when I was going to be asleep. I knew it was being taken from me at one stage, but what on earth could I do? Anyway, it came back.

I am a half glass full sort of person. We can make this better and we should, for our collective benefit. I hope we can.

I’m doing really well. I’m just waiting to be sent home. Fingers crossed.

And please keep safe out there. Listening to the news makes me wonder why I want to come back out at all !

OP posts:
Original poster
LittleSpyintheSky · 23/12/2020 23:24

I’ve just found out that the two elderly ladies who were in here both died. I thought they’d been taken elsewhere. This is so beyond my life experiences. So sad. Night night xx

OP posts:
AllDoneIn · 24/12/2020 00:35

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

Lovely1a2b3c · 24/12/2020 01:27

Thinking of you Littlespyinthesky. It sounds so scary for you- keep standing up for yourself! I really hope things continue improving and that you can get home very soon.