WEBVTT
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Hi, it's Brenda McGrath from the NTSP.
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So we've got a real treat for you this month with a special interview with Nick, who is one of our patients recovering on our intensive care unit in Manchester with a tracheostomy.
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So Nick was good enough to take the time to have a chat with me about what it's like sitting in an ICU, trying to get off a ventilator and trying to overcome all the problems that his condition and his tracheostomy have given him.
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He talks really openly about what it's like being a patient on an ICU, and I think it gives you some really useful insights if you're a staff member or a family member about what it's like being the patient in that situation.
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Right, Nick, thanks for taking the time to talk to us.
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So I know you're currently sat in a tentative care unit on a ventilator with your tracheostomy recovering from your illness.
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And I just wondered if you'd be able to just explain to us what it was like when you first sort of woke up and you had your tracheostomy.
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Yeah.
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Sort of in and out of consciousness.
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Okay.
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So I didn't really register what I had until a few days later.
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Okay.
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Were you able to speak?
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No.
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And how long was it before you worked out that that was because of the tracheostomy tube?
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I couldn't tell you.
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Yeah.
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It would have been a few days at least.
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Okay, and you were awake enough to try and communicate, weren't you?
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But obviously no words were coming out of your mouth.
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W what was that like?
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I wouldn't say it was frustrating because I was quickly given a white board.
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Okay.
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So I was communicating.
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Sorry.
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Okay.
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And did you find you could do that reasonably effectively?
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Pretty effectively.
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Okay.
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But initially it was difficult to hold the board.
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Yeah, I think that's it, because in a situation like yours, you know, you're globally weak, you've you've been unwell for a little while, and it's not just the voice that goes, is it?
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It's uh it's the rest of you as well.
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All the strength.
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Yeah.
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Okay.
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And we jiggled the ventilator around a little bit, we got your cuff down and and and and we we got you talking again, and you know your voice isn't as good as it is normally, clearly, but we can understand you.
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What was it like when you first got your voice back?
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Can you remember?
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Um to be able to talk, but it was a lot more tiring to communicate ready.
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But still nice to be able to talk to you know, the nurses, doctors, a little bit more patients when you have a voice.
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Yes.
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And um obviously my wife, my mum.
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So good to have the voice.
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Yeah, no, it's important, isn't it?
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When we first took that cuff down, do you remember what that what that felt like?
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I thought it was quite a relief.
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Yeah.
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Because I was able to suck in our hair.
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Okay.
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Yeah.
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I was providing button.
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Yeah, but that's how it felt to you.
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Okay, that's interesting actually, because we often find that even though we've taken the cuff down and in theory you're getting a bit less help from the ventilator, people often report just what you've done and say, Do you know what?
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I prefer with the cuff down.
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So would you say that's the case for you?
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I've got more control of my breathing.
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Okay.
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How have you got on with sort of managing the secretions, you know, the the spit and saliva that we normally produce?
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Yes.
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A lot of flow secretion.
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Some days worse than others.
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Not sure.
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That has to do with my diet, how that I can eat.
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Yeah.
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Um I know these foreign bodies causing extra secretions.
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Yeah, yeah.
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You've got your sucker in your hand haven't you're ready to go.
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And have you found, I mean you you we did talk this morning we as you were just finishing your Uita bicks off, so you've obviously got back to eating and drinking again.
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Have you found you're able to swallow your secretions a little bit more easily as time's gone on?
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Swallow the flower.
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Yeah.
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Stall in that.
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I'm just sectioning that.
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Okay.
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And tell me about food and drink then.
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Can you remember having your first drink or was it food first of all?
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I remember the speech and language.
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Therapists came to test my ability.
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Yeah.
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And um I was um overwhelmed.
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And they told me that I was able to drink.
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Yeah.
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Um but the first thing I got was black currants.
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Yeah.
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Yeah.
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That was pretty good.
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You remember the taste?
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You've obviously remembered, so yeah, fantastic.
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I've already gone every day.
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Yeah.
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Cool.
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Okay.
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And did you have the camera up your nose when they were looking at the back of your throat when you did that?
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Yeah.
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How did you find that?
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Um I don't mind.
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Yeah.
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I mean I don't mind having things rubbed on my body.
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Or things stuck in the anymore.
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Yeah.
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Yeah, you've sort of got used to it, I suppose.
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Yeah.
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Okay.
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And and you're eating and drinking a bit now while you're still on the ventilator with a tracheostomy.
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So how do you find eating and drinking when you've got the trache?
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I lack a bit of confidence when I'm eating.
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Just because sometimes it feels a bit hard to swallow completely.
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Yeah.
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But it gets down in the end, does it?
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Just obviously it doesn't feel normal, it sounds like.
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Yeah.
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Okay.
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One of the things I wanted to ask you about was we're we're in the process of trying to get you off the ventilator.
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So as you get stronger, you're doing more work and the ventilator's doing less work.
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And the way we're doing that with you is what we're calling sprinting, where at the moment the ventilator provides a certain amount of help, and when we're sprinting, we drop that level right down and you do all the work.
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So I was going to just ask from your point of view, what does it feel like when you know you've got a sprint coming up and then you do the sprint and then you get towards the end of the sprint?
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So what are your experiences of us weaning you in that way?
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It's gone through phases.
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Yeah.
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Obviously, there's mental aspect.
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Um physically, you need to progress.
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I think a few areas including physical, yeah, mentally.
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Wow.
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Wow.
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Mentally is difficult.
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Yeah.
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I know that if I have no pain, it's easier to forget.
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Yeah.
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About the weaning.
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But preparing yourself mentally can be quite a challenge.
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Yeah.
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And if you know you've got a sprint coming up, do you sort of do you get a bit apprehensive about it?
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Depends.
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Yeah.
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Okay.
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And do you notice a big difference in yourself when you go from resting, if you like, to sprinting?
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Does it feel like hard work?
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I need to be fully arrested.
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Yeah.
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And so detached.
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Okay.
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To start or sprint.
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Okay.
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Because I focus.
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Under breathing becomes sort of anxiety.
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Yeah, okay.
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Yeah, and what we try to do is is is give you that rest period before you're ready.
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And and do you find you feel like you've got control over when the sort of sprints happen, or is that something that if you're like is is is worth doing it to you, or do you feel you've got some control over it?
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If you're not up to it, we we can delay it, things like that.
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I feel I have control over when things happen.
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Okay.
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But honestly, I'm gonna try and push myself as possible.
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But some days fatigue sits in quite heavily.
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Okay.
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Yeah, because one of the things that we're focusing on is getting you out of here as soon as possible.
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And obviously we've got to get rid of the ventilator first, then get rid of the tracheostomy, and then a few of these other pipes and tubes.
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But what we found this approach of sprinting is that sometimes people can move forward a bit faster than we thought, and by this the sprinting is a way of finding that out, and so that's why we've gone that way with you because what we found in our practice here is that the sprints tell us how good you are and how quick we can move things, because if we did it very gradually, we might find actually we could have done it a lot faster.
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And so, yeah, I've seen you on some of your sprints and you seem to tolerate them pretty well.
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But I I know, for example, I think it was yesterday's sprint, you got a bit tired towards the end.
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Can you feel that fatigue sort of setting in?
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I'm just interested what that feels like from your perspective.
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Because from our perspective, we can see it sometimes on the monitor, we see your heart rate go up and your breathing rate go up.
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But from your perspective, what does that feel like?
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I mean, I start to feel very warm.
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Yeah.
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Tired, just tired make you want to sleep.
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Okay.
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And do you keep half an eye on some of the numbers and the monitors?
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You've been here long enough to work out what they all do?
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Yeah.
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All right, yes.
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Yeah.
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Some of them.
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Yeah, that's really interesting.
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I mean, that that sort of patient perspective is something that's really interesting for for us to sort of hear.
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Because what we try and do is is have a negotiation and a discussion about you know what are we going to do going forwards to get you out of here as fast as possible.
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Um, can I ask you about sleep?
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How do you find your sleep while you're on the ventilator like this?
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Sleep's not too bad.
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Try to strap my mouth closed.
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Okay.
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To keep the breathing more efficient.
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You find that helps.
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Yeah.
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Okay.
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Apart from that.
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Yeah.
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Not too bad, just sometimes I'd wake up in the night with dry air because the fluid.
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Oh, okay.
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Okay.
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And mobilising and getting around, how have you found that?
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Because I know we've been getting you out of bed, obviously.
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We've been working with the physios and I've seen them sort of doing some exercises with you.
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How do you find moving around when you attach the ventilator like this?
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Moving's difficult.
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Yeah.
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Able to take a few steps.
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The west part of moving around in the bed.
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It's not necessarily the tripping.
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It's more alliance.
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Yeah, okay.
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So it's all the all the paraphernalia that's uh slowing you down.
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Yeah.
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Okay.
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Um I was gonna ask you, is there anything that you would want another patient in your position to know, or maybe a family?
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So if if a family has got a patient in a position like you found yourself in, anything that you think would help for them to know about what it's like having a tracheostomy?
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I'm putting you on the spot there.
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Just being ready to be uh patient.
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Yeah.
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So patience.
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Patience.
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Okay.
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And now you have to try and find a way to stay positive.
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Okay.
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Alright, thank you.
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Um I was going to ask as well if you have got any thoughts you would like to share with healthcare professionals like me.
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If, you know, the experiences that you've had, is there anything you think we could do better?
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Anything you think we do well, or just I guess any top tips from the patient at the centre of it all?
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I mean listen to the patient.
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Don't whisper like the numbers.
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Yeah, it's pretty much.
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Okay.
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So patients can feel things within themselves.
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Okay.
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Higher energy levels, lighting us, things that might be overlooked.
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Okay.
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So trust the patient.
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Yeah, okay.
00:13:42.639 --> 00:13:50.159
And any sort of any things we could do better, do you think, in the way that we look after you, particularly focusing on the tracheostomy?
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Is there any anything you would like us to be doing or like us to have done?
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Everybody here is very supportive.
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So I can't see.
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I know we change anyway.
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Okay.
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Thank you.
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And for the benefit of the tape, I didn't feed you that line before, did I?
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Oh thank you for that.
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It's good to hear that we're doing a few things right, so that's great.
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Okay, good stuff.
00:14:14.799 --> 00:14:16.320
Um, thanks for talking to me, Nick.
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I really appreciate that.
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That was brilliant.
00:14:18.639 --> 00:14:19.279
Thank you so much.
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That's honestly hearing it from you is just amazing compared to me standing for saying patients want this and patients want that.
00:14:27.200 --> 00:14:29.519
Um, so that that'll be amazing.
00:14:30.080 --> 00:14:38.320
So I want to thank Nick for his openness and for really giving us an insight into what it's like being a patient recovering with a tracheostomy or an intensive care year.
00:14:38.639 --> 00:14:40.879
Please report that Nick's doing really well.
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If you found that interesting, there's lots more information like that in our podcast series and on our website, which is tracheostomy.org.uk.
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Thanks to Simon Williams for producing this episode, and we look forward to seeing you in other episodes of Tracheotalk.
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Bye for now.
00:00:07.280 --> 00:00:10.000
Hi, it's Brenda McGrath from the NTSP.
00:00:10.160 --> 00:00:19.839
So we've got a real treat for you this month with a special interview with Nick, who is one of our patients recovering on our intensive care unit in Manchester with a tracheostomy.
00:00:20.079 --> 00:00:35.039
So Nick was good enough to take the time to have a chat with me about what it's like sitting in an ICU, trying to get off a ventilator and trying to overcome all the problems that his condition and his tracheostomy have given him.
00:00:35.280 --> 00:00:47.840
He talks really openly about what it's like being a patient on an ICU, and I think it gives you some really useful insights if you're a staff member or a family member about what it's like being the patient in that situation.
00:00:48.159 --> 00:00:50.799
Right, Nick, thanks for taking the time to talk to us.
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So I know you're currently sat in a tentative care unit on a ventilator with your tracheostomy recovering from your illness.
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And I just wondered if you'd be able to just explain to us what it was like when you first sort of woke up and you had your tracheostomy.
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Yeah.
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Sort of in and out of consciousness.
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Okay.
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So I didn't really register what I had until a few days later.
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Okay.
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Were you able to speak?
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No.
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And how long was it before you worked out that that was because of the tracheostomy tube?
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I couldn't tell you.
00:01:35.439 --> 00:01:35.599
Yeah.
00:01:35.840 --> 00:01:38.000
It would have been a few days at least.
00:01:38.319 --> 00:01:42.400
Okay, and you were awake enough to try and communicate, weren't you?
00:01:42.480 --> 00:01:44.480
But obviously no words were coming out of your mouth.
00:01:44.719 --> 00:01:45.920
W what was that like?
00:01:46.959 --> 00:01:56.000
I wouldn't say it was frustrating because I was quickly given a white board.
00:01:56.400 --> 00:01:56.719
Okay.
00:01:57.040 --> 00:01:59.200
So I was communicating.
00:01:59.519 --> 00:02:00.079
Sorry.
00:02:00.480 --> 00:02:00.799
Okay.
00:02:00.879 --> 00:02:03.439
And did you find you could do that reasonably effectively?
00:02:04.400 --> 00:02:05.359
Pretty effectively.
00:02:05.680 --> 00:02:05.920
Okay.
00:02:06.239 --> 00:02:12.080
But initially it was difficult to hold the board.
00:02:14.319 --> 00:02:22.240
Yeah, I think that's it, because in a situation like yours, you know, you're globally weak, you've you've been unwell for a little while, and it's not just the voice that goes, is it?
00:02:22.319 --> 00:02:24.159
It's uh it's the rest of you as well.
00:02:24.479 --> 00:02:25.439
All the strength.
00:02:25.759 --> 00:02:26.240
Yeah.
00:02:26.719 --> 00:02:27.039
Okay.
00:02:27.759 --> 00:02:38.960
And we jiggled the ventilator around a little bit, we got your cuff down and and and and we we got you talking again, and you know your voice isn't as good as it is normally, clearly, but we can understand you.
00:02:39.280 --> 00:02:42.000
What was it like when you first got your voice back?
00:02:42.080 --> 00:02:43.120
Can you remember?
00:02:44.159 --> 00:02:53.840
Um to be able to talk, but it was a lot more tiring to communicate ready.
00:02:54.879 --> 00:03:05.360
But still nice to be able to talk to you know, the nurses, doctors, a little bit more patients when you have a voice.
00:03:05.520 --> 00:03:05.919
Yes.
00:03:06.240 --> 00:03:10.240
And um obviously my wife, my mum.
00:03:10.879 --> 00:03:12.639
So good to have the voice.
00:03:12.879 --> 00:03:14.560
Yeah, no, it's important, isn't it?
00:03:14.879 --> 00:03:18.800
When we first took that cuff down, do you remember what that what that felt like?
00:03:20.319 --> 00:03:22.960
I thought it was quite a relief.
00:03:23.199 --> 00:03:23.680
Yeah.
00:03:24.000 --> 00:03:28.240
Because I was able to suck in our hair.
00:03:28.560 --> 00:03:28.879
Okay.
00:03:31.280 --> 00:03:31.599
Yeah.
00:03:32.879 --> 00:03:34.159
I was providing button.
00:03:36.879 --> 00:03:38.560
Yeah, but that's how it felt to you.
00:03:39.759 --> 00:03:50.400
Okay, that's interesting actually, because we often find that even though we've taken the cuff down and in theory you're getting a bit less help from the ventilator, people often report just what you've done and say, Do you know what?
00:03:50.479 --> 00:03:51.919
I prefer with the cuff down.
00:03:52.000 --> 00:03:54.240
So would you say that's the case for you?
00:03:56.400 --> 00:04:00.000
I've got more control of my breathing.
00:04:00.240 --> 00:04:00.560
Okay.
00:04:01.360 --> 00:04:07.039
How have you got on with sort of managing the secretions, you know, the the spit and saliva that we normally produce?
00:04:07.280 --> 00:04:07.840
Yes.
00:04:08.479 --> 00:04:11.599
A lot of flow secretion.
00:04:11.840 --> 00:04:14.240
Some days worse than others.
00:04:14.719 --> 00:04:15.520
Not sure.
00:04:15.840 --> 00:04:19.600
That has to do with my diet, how that I can eat.
00:04:19.839 --> 00:04:20.319
Yeah.
00:04:20.639 --> 00:04:26.560
Um I know these foreign bodies causing extra secretions.
00:04:26.879 --> 00:04:27.839
Yeah, yeah.
00:04:28.720 --> 00:04:31.120
You've got your sucker in your hand haven't you're ready to go.
00:04:31.360 --> 00:04:40.000
And have you found, I mean you you we did talk this morning we as you were just finishing your Uita bicks off, so you've obviously got back to eating and drinking again.
00:04:40.399 --> 00:04:46.160
Have you found you're able to swallow your secretions a little bit more easily as time's gone on?
00:04:47.680 --> 00:04:48.639
Swallow the flower.
00:04:48.879 --> 00:04:49.040
Yeah.
00:04:51.519 --> 00:04:52.720
Stall in that.
00:04:53.439 --> 00:04:55.199
I'm just sectioning that.
00:04:55.600 --> 00:04:55.839
Okay.
00:04:56.319 --> 00:04:58.480
And tell me about food and drink then.
00:04:58.720 --> 00:05:02.720
Can you remember having your first drink or was it food first of all?
00:05:03.279 --> 00:05:05.920
I remember the speech and language.
00:05:06.319 --> 00:05:10.480
Therapists came to test my ability.
00:05:10.639 --> 00:05:10.959
Yeah.
00:05:11.199 --> 00:05:17.199
And um I was um overwhelmed.
00:05:17.439 --> 00:05:20.639
And they told me that I was able to drink.
00:05:20.800 --> 00:05:20.879
Yeah.
00:05:23.199 --> 00:05:27.600
Um but the first thing I got was black currants.
00:05:27.839 --> 00:05:28.160
Yeah.
00:05:29.759 --> 00:05:30.079
Yeah.
00:05:30.399 --> 00:05:31.920
That was pretty good.
00:05:32.160 --> 00:05:33.120
You remember the taste?
00:05:33.279 --> 00:05:36.319
You've obviously remembered, so yeah, fantastic.
00:05:36.639 --> 00:05:38.639
I've already gone every day.
00:05:38.879 --> 00:05:39.040
Yeah.
00:05:40.160 --> 00:05:40.480
Cool.
00:05:40.639 --> 00:05:40.800
Okay.
00:05:40.879 --> 00:05:44.480
And did you have the camera up your nose when they were looking at the back of your throat when you did that?
00:05:44.639 --> 00:05:44.959
Yeah.
00:05:45.279 --> 00:05:46.560
How did you find that?
00:05:46.800 --> 00:05:48.480
Um I don't mind.
00:05:48.720 --> 00:05:49.040
Yeah.
00:05:49.360 --> 00:05:54.079
I mean I don't mind having things rubbed on my body.
00:05:54.399 --> 00:05:56.240
Or things stuck in the anymore.
00:05:56.480 --> 00:05:56.879
Yeah.
00:05:57.040 --> 00:05:59.040
Yeah, you've sort of got used to it, I suppose.
00:05:59.199 --> 00:05:59.439
Yeah.
00:05:59.680 --> 00:05:59.920
Okay.
00:06:00.240 --> 00:06:04.879
And and you're eating and drinking a bit now while you're still on the ventilator with a tracheostomy.
00:06:04.959 --> 00:06:08.800
So how do you find eating and drinking when you've got the trache?
00:06:10.560 --> 00:06:14.240
I lack a bit of confidence when I'm eating.
00:06:14.879 --> 00:06:21.680
Just because sometimes it feels a bit hard to swallow completely.
00:06:21.839 --> 00:06:22.240
Yeah.
00:06:23.120 --> 00:06:25.040
But it gets down in the end, does it?
00:06:25.279 --> 00:06:27.759
Just obviously it doesn't feel normal, it sounds like.
00:06:28.000 --> 00:06:28.399
Yeah.
00:06:28.720 --> 00:06:29.040
Okay.
00:06:30.480 --> 00:06:36.959
One of the things I wanted to ask you about was we're we're in the process of trying to get you off the ventilator.
00:06:37.040 --> 00:06:41.279
So as you get stronger, you're doing more work and the ventilator's doing less work.
00:06:41.360 --> 00:06:51.439
And the way we're doing that with you is what we're calling sprinting, where at the moment the ventilator provides a certain amount of help, and when we're sprinting, we drop that level right down and you do all the work.
00:06:51.519 --> 00:07:00.720
So I was going to just ask from your point of view, what does it feel like when you know you've got a sprint coming up and then you do the sprint and then you get towards the end of the sprint?
00:07:00.959 --> 00:07:04.639
So what are your experiences of us weaning you in that way?
00:07:05.759 --> 00:07:08.000
It's gone through phases.
00:07:08.319 --> 00:07:08.959
Yeah.
00:07:10.000 --> 00:07:13.680
Obviously, there's mental aspect.
00:07:18.079 --> 00:07:21.680
Um physically, you need to progress.
00:07:22.560 --> 00:07:29.839
I think a few areas including physical, yeah, mentally.
00:07:31.680 --> 00:07:32.000
Wow.
00:07:32.240 --> 00:07:32.399
Wow.
00:07:32.879 --> 00:07:34.160
Mentally is difficult.
00:07:34.240 --> 00:07:34.560
Yeah.
00:07:36.079 --> 00:07:42.879
I know that if I have no pain, it's easier to forget.
00:07:43.279 --> 00:07:43.680
Yeah.
00:07:43.920 --> 00:07:46.079
About the weaning.
00:07:48.319 --> 00:07:53.519
But preparing yourself mentally can be quite a challenge.
00:07:53.680 --> 00:07:54.000
Yeah.
00:07:54.240 --> 00:07:59.360
And if you know you've got a sprint coming up, do you sort of do you get a bit apprehensive about it?
00:07:59.920 --> 00:08:00.639
Depends.
00:08:00.800 --> 00:08:01.439
Yeah.
00:08:01.839 --> 00:08:02.160
Okay.
00:08:02.800 --> 00:08:09.120
And do you notice a big difference in yourself when you go from resting, if you like, to sprinting?
00:08:09.439 --> 00:08:11.120
Does it feel like hard work?
00:08:11.920 --> 00:08:14.319
I need to be fully arrested.
00:08:14.639 --> 00:08:14.959
Yeah.
00:08:15.279 --> 00:08:18.160
And so detached.
00:08:18.399 --> 00:08:18.560
Okay.
00:08:18.959 --> 00:08:20.560
To start or sprint.
00:08:20.720 --> 00:08:20.959
Okay.
00:08:21.439 --> 00:08:23.439
Because I focus.
00:08:23.839 --> 00:08:28.480
Under breathing becomes sort of anxiety.
00:08:28.800 --> 00:08:29.199
Yeah, okay.
00:08:30.800 --> 00:08:35.519
Yeah, and what we try to do is is is give you that rest period before you're ready.
00:08:35.600 --> 00:08:47.759
And and do you find you feel like you've got control over when the sort of sprints happen, or is that something that if you're like is is is worth doing it to you, or do you feel you've got some control over it?
00:08:48.080 --> 00:08:50.879
If you're not up to it, we we can delay it, things like that.
00:08:51.200 --> 00:08:54.799
I feel I have control over when things happen.
00:08:54.960 --> 00:08:55.200
Okay.
00:08:55.440 --> 00:08:59.679
But honestly, I'm gonna try and push myself as possible.
00:09:00.639 --> 00:09:05.919
But some days fatigue sits in quite heavily.
00:09:06.240 --> 00:09:06.559
Okay.
00:09:07.279 --> 00:09:12.159
Yeah, because one of the things that we're focusing on is getting you out of here as soon as possible.
00:09:12.240 --> 00:09:17.919
And obviously we've got to get rid of the ventilator first, then get rid of the tracheostomy, and then a few of these other pipes and tubes.
00:09:18.080 --> 00:09:41.039
But what we found this approach of sprinting is that sometimes people can move forward a bit faster than we thought, and by this the sprinting is a way of finding that out, and so that's why we've gone that way with you because what we found in our practice here is that the sprints tell us how good you are and how quick we can move things, because if we did it very gradually, we might find actually we could have done it a lot faster.
00:09:41.200 --> 00:09:45.600
And so, yeah, I've seen you on some of your sprints and you seem to tolerate them pretty well.
00:09:45.759 --> 00:09:51.120
But I I know, for example, I think it was yesterday's sprint, you got a bit tired towards the end.
00:09:51.679 --> 00:09:54.000
Can you feel that fatigue sort of setting in?
00:09:54.320 --> 00:09:56.559
I'm just interested what that feels like from your perspective.
00:09:56.720 --> 00:10:02.159
Because from our perspective, we can see it sometimes on the monitor, we see your heart rate go up and your breathing rate go up.
00:10:02.240 --> 00:10:05.039
But from your perspective, what does that feel like?
00:10:06.240 --> 00:10:08.960
I mean, I start to feel very warm.
00:10:09.200 --> 00:10:09.519
Yeah.
00:10:10.000 --> 00:10:15.039
Tired, just tired make you want to sleep.
00:10:15.279 --> 00:10:15.600
Okay.
00:10:16.480 --> 00:10:20.559
And do you keep half an eye on some of the numbers and the monitors?
00:10:21.200 --> 00:10:23.440
You've been here long enough to work out what they all do?
00:10:24.000 --> 00:10:24.480
Yeah.
00:10:24.879 --> 00:10:25.519
All right, yes.
00:10:25.840 --> 00:10:26.000
Yeah.
00:10:26.399 --> 00:10:26.879
Some of them.
00:10:27.679 --> 00:10:29.039
Yeah, that's really interesting.
00:10:29.120 --> 00:10:33.840
I mean, that that sort of patient perspective is something that's really interesting for for us to sort of hear.
00:10:34.000 --> 00:10:43.600
Because what we try and do is is have a negotiation and a discussion about you know what are we going to do going forwards to get you out of here as fast as possible.
00:10:43.840 --> 00:10:45.759
Um, can I ask you about sleep?
00:10:46.000 --> 00:10:49.039
How do you find your sleep while you're on the ventilator like this?
00:10:50.799 --> 00:10:53.039
Sleep's not too bad.
00:10:55.279 --> 00:10:58.240
Try to strap my mouth closed.
00:10:58.399 --> 00:10:58.559
Okay.
00:10:59.039 --> 00:11:02.240
To keep the breathing more efficient.
00:11:03.120 --> 00:11:04.320
You find that helps.
00:11:04.639 --> 00:11:04.879
Yeah.
00:11:05.120 --> 00:11:05.279
Okay.
00:11:05.679 --> 00:11:06.720
Apart from that.
00:11:07.360 --> 00:11:07.759
Yeah.
00:11:08.000 --> 00:11:16.879
Not too bad, just sometimes I'd wake up in the night with dry air because the fluid.
00:11:18.320 --> 00:11:19.039
Oh, okay.
00:11:19.519 --> 00:11:19.840
Okay.
00:11:20.559 --> 00:11:24.720
And mobilising and getting around, how have you found that?
00:11:24.799 --> 00:11:27.120
Because I know we've been getting you out of bed, obviously.
00:11:27.279 --> 00:11:32.159
We've been working with the physios and I've seen them sort of doing some exercises with you.
00:11:32.559 --> 00:11:36.720
How do you find moving around when you attach the ventilator like this?
00:11:38.000 --> 00:11:39.039
Moving's difficult.
00:11:39.200 --> 00:11:39.679
Yeah.
00:11:40.960 --> 00:11:43.200
Able to take a few steps.
00:11:46.879 --> 00:11:50.879
The west part of moving around in the bed.
00:11:51.360 --> 00:11:54.480
It's not necessarily the tripping.
00:11:54.639 --> 00:11:56.240
It's more alliance.
00:11:56.639 --> 00:11:57.600
Yeah, okay.
00:11:57.840 --> 00:12:01.200
So it's all the all the paraphernalia that's uh slowing you down.
00:12:02.240 --> 00:12:02.480
Yeah.
00:12:02.799 --> 00:12:03.039
Okay.
00:12:04.000 --> 00:12:15.440
Um I was gonna ask you, is there anything that you would want another patient in your position to know, or maybe a family?
00:12:15.600 --> 00:12:27.360
So if if a family has got a patient in a position like you found yourself in, anything that you think would help for them to know about what it's like having a tracheostomy?
00:12:28.480 --> 00:12:30.320
I'm putting you on the spot there.
00:12:31.919 --> 00:12:35.039
Just being ready to be uh patient.
00:12:35.440 --> 00:12:36.080
Yeah.
00:12:36.559 --> 00:12:37.759
So patience.
00:12:38.240 --> 00:12:38.879
Patience.
00:12:39.120 --> 00:12:39.440
Okay.
00:12:39.840 --> 00:12:45.039
And now you have to try and find a way to stay positive.
00:12:45.519 --> 00:12:45.840
Okay.
00:12:47.200 --> 00:12:48.559
Alright, thank you.
00:12:48.720 --> 00:12:57.440
Um I was going to ask as well if you have got any thoughts you would like to share with healthcare professionals like me.
00:12:57.759 --> 00:13:02.559
If, you know, the experiences that you've had, is there anything you think we could do better?
00:13:03.360 --> 00:13:09.600
Anything you think we do well, or just I guess any top tips from the patient at the centre of it all?
00:13:10.879 --> 00:13:14.960
I mean listen to the patient.
00:13:16.000 --> 00:13:18.879
Don't whisper like the numbers.
00:13:19.200 --> 00:13:21.279
Yeah, it's pretty much.
00:13:22.960 --> 00:13:23.279
Okay.
00:13:24.559 --> 00:13:30.879
So patients can feel things within themselves.
00:13:31.200 --> 00:13:31.440
Okay.
00:13:31.840 --> 00:13:37.840
Higher energy levels, lighting us, things that might be overlooked.
00:13:38.080 --> 00:13:38.399
Okay.
00:13:39.120 --> 00:13:40.559
So trust the patient.
00:13:41.200 --> 00:13:42.320
Yeah, okay.
00:13:42.639 --> 00:13:50.159
And any sort of any things we could do better, do you think, in the way that we look after you, particularly focusing on the tracheostomy?
00:13:50.240 --> 00:13:54.559
Is there any anything you would like us to be doing or like us to have done?
00:13:55.360 --> 00:13:58.320
Everybody here is very supportive.
00:13:59.200 --> 00:14:01.519
So I can't see.
00:14:02.159 --> 00:14:03.440
I know we change anyway.
00:14:03.679 --> 00:14:03.919
Okay.
00:14:04.320 --> 00:14:04.720
Thank you.
00:14:05.120 --> 00:14:08.720
And for the benefit of the tape, I didn't feed you that line before, did I?
00:14:09.279 --> 00:14:10.159
Oh thank you for that.
00:14:10.320 --> 00:14:13.120
It's good to hear that we're doing a few things right, so that's great.
00:14:13.279 --> 00:14:14.559
Okay, good stuff.
00:14:14.799 --> 00:14:16.320
Um, thanks for talking to me, Nick.
00:14:16.399 --> 00:14:17.120
I really appreciate that.
00:14:18.000 --> 00:14:18.559
That was brilliant.
00:14:18.639 --> 00:14:19.279
Thank you so much.
00:14:19.360 --> 00:14:27.120
That's honestly hearing it from you is just amazing compared to me standing for saying patients want this and patients want that.
00:14:27.200 --> 00:14:29.519
Um, so that that'll be amazing.
00:14:30.080 --> 00:14:38.320
So I want to thank Nick for his openness and for really giving us an insight into what it's like being a patient recovering with a tracheostomy or an intensive care year.
00:14:38.639 --> 00:14:40.879
Please report that Nick's doing really well.
00:14:41.200 --> 00:14:48.480
If you found that interesting, there's lots more information like that in our podcast series and on our website, which is tracheostomy.org.uk.
00:14:48.960 --> 00:14:54.799
Thanks to Simon Williams for producing this episode, and we look forward to seeing you in other episodes of Tracheotalk.
00:14:54.960 --> 00:14:55.679
Bye for now.
