Long Covid in Adults

Finally just talking about the quality of care that I received, during the Covid itself it was very frightening. You can’t see a doctor but once you get told how to get beyond the initial one-one-one response, they give you a code so that you can get in and get past the person who triages whether you need to speak to someone and actually eventually you get to speak to a nurse. Usually, a nurse will ring you back. And they were very good, the people that rang me back, the nurses, they…they could help calm me down and talk you through your symptoms and tell you this is when you need to go to hospital, if this happens you need to go to hospital. So, all of that was good and using the oxygenator measure was good and that helped me to know…I knew when that went to a certain point that I had to…had to call for an ambulance.

The GP was good as well. There was obviously links in one-one-one and the GP and the GP did a follow-up call to me the day after I’d had a consultation with 111, so they obviously were linked and that was, you know, it was at the height of it, so it was impressive.

I can’t remember whether it was week three or week four, went out and saw my neighbour across the road, who’s a GP and she said, “How are you feeling?” And I went “Not great actually, but I’m supposed to be well, so you know, here I am, I’m not feeling very good.” And she said, “Do you have an oximeter?” And I said “Well, there’s one on my Garmin.” And she said so, “What are, what are you blood sats like on your Garmin?”, and I went “Oh, they’re alright you know, they’re still over 90 kind of 91 92.”
 
And she said “[name] I’ve admitted someone with those bloods today, that’s not where they should be.” And I went “Oh, really, you know, you know they might dip down into the 80’s you know, but they’re fine, they’re over 90 aren’t they, that isn’t that alright?” And she said “No, no that’s not alright.” [Laughs]. And this was you know, this was the point at which there were reports of this thing you know, this silent hypoxia. People being, feeling fine and then just collapsing, so she said, “I want you to go back inside, I want you to ring 111.” And I said “well why? I tried ringing 111, nobody answered.” She said “We’re a bit better organised now. We’re organised into a Primary Care hub, so I want you to go inside I want you to ring, ring 111 and they will take it from there.”
 
So, I did, and I spoke to someone, so this about, this would’ve been about quarter past eight, I spoke to the triage person, I was rung back within 45 minutes by the GP that was on call, and by about quarter past 10 there was a GP on my doorstep with a hospital grade oximeter. And he stood on the doorstep and waited for me to take my sats, to decide whether he needed to admit me, and they were at about 94 and so he said, “no I’m going to leave you at home it’s probably safer.” And from that point onwards I was monitored at home, rung twice a day by the by the GP hub.

And when you were first feeling so unwell, Jamie, did you first get in touch with your GP to talk about that, or did you go straight to the hospital?
 
I phoned up, 111, to be honest. Because the GPs weren’t seeing you, so it was kind of hard to really explain it to them over the phone, and I don’t think there was much they could really do for me, to be honest. Yeah, it was more the Covid Hub that I went to at first, and then I’d had a couple of visits to A&E because I had chest pain, and breathlessness, so I didn’t really know what was going on, I went to A&E. And again, all my stats were fine.
 
I felt like I was in a bit of a tough…I was somewhere in-between, like I shouldn’t be going to A&E because it wasn’t that severe, but my GP, at the same time, wasn’t really helpful, either. They just, they didn’t know what was going on, Kate [name of interviewer]. But I understand it was a new virus, so they didn’t have much info either. But it was a just a, I kind of felt a bit stuck in the middle of the two, if you know what I mean.
 
Yeah, yeah. And that must’ve raised a lot of difficult feelings at the time?
 
It was a really, I just felt really isolated, and…in a very lonely place, to be honest. I mean, I just felt I didn’t really have, l didn’t want to pester the A&E team, and my GP didn’t have any answers for me either, so I was kind of stuck in a hard place.

I'd travelled with my sister to the concert, and you know, getting out the car I said to her, you know, I think I'm sick, and she said, “yeah, I think you’re sick as well, go in, go to bed”. And it was during that night, that I couldn’t breathe, and it just seemed to come from nowhere. Because I felt like I was getting better. Otherwise, I wouldn’t have gone to the concert, just a bit of a runny nose, I was fine, and then it just suddenly seemed to get much, much worse, just over the space of a few hours.

And was it then that you went to the out of hours?

Yeah, it was the next morning, early the next morning. So, I'd sort of been up all night, inhalers, I didn’t want to wake my husband or the kids up, I was getting a bit concerned that I couldn’t breathe, my breathing was really bad. So, yeah, the next morning, early in the morning, I phoned out of hours to see if I could speak to someone.

And did they see you in person?

Yeah, yeah. Which was, it was so strange, because that was the first experience of the full PPE and going into the out of hours and there was all these beds laid out, I'd never seen anything like that. I've had the kids, you know, three kids, I've had them at out of hours multiple times over the years, and just seeing, it was as if they were preparing for something horrendous. And it was quite frightening, actually, to look at it and think, what is, what’s coming our way. And now we know what was coming our way, but the full, the mask, and the full PPE, and it was the first time I'd seen that, and coming home to my husband and saying, this isn’t good, this is really not good, but yeah. At least I was seen by someone.

But in the hospital, they were like, I walked in, again, I carried him in. Oh, we were in the room and she was, “Can we go in the corridor, I just want to weigh him.” And the corridor was literally, you open the room and it’s like five steps and then we brought him back and she was like, “See, you know, there’s been weight gain from the first visit. So again, we’re not worried about that.” And I was like, [whisper] [laughs]. And she’s like, “My god, you’re out of breath. Like five steps there and back.” And my chest was in so much pain. I was grey in the face, and she was like, “Okay, I know you’re here for baby but is anyone following this through? Has anyone seen you?’.
 
I was like, “Well, the doctor originally who sent my baby here did.” And while I was sitting there, she phoned me and she said, “I’ve spoken to the specialist, and they want to do a CT scan. Are you still at the hospital?” [Laughs]. I was like, “Yeah.” So, because they had by then, they had, I was just waiting for the discharge note for my little one, I then we brought little one home and then I went back and done my CT and he said to me, he said, “I can see that Covid has left its mark. It shows moderate.” And he was the first person to explain to me the different levels of Covid and he said, “So, you know, I think I believe, at this point, you should have been seen.”

And when you say in hospital, are you referring to the A&E?

A&E.

Yeah, so you've not had any inpatient stays?

No overnights, literally an hour, "Let's do some tests" and…and you're away. Two…yeah, two of those were really good. Both, kind of listened to, understood, both doctors really good. Like, "Right, let's make sure this is nothing else. Let's do some bloods, let's check these other things". One of them…and I haven't counted it as a visit, I had the second bout of chest pain, I had really, really bad chest pain the day after that I'd been in A&E and their parting thing was, "Right, if you get chest pain again, if you get this again, come back". 

Came back in, presented with exactly the same symptoms and the team weren't quite sure what to do with me. So, I got sat in a chair for over an hour with nothing being done. And the result was, "Oh, we think it's all the other symptoms of long Covid, so just take some paracetamol". And that doctor was very dismissive. I felt very let down. The other time…and I'm not someone that wants attention, but every other time I've come in I've got a bed, done some bloods or we've put you on an ECG, this was, "Right, just sit in a chair for an hour", like I'd been forgotten, then when I did get it they took me to another bit of the hospital, because that was quieter, and just said, "Oh, there's nothing we can do, go away, take some paracetamol". "I'd just been taken off tramadol by your colleague yesterday, I have an acute pain requirement to have tramadol, paracetamol's not going to hit that”, and the parting, “Why are you here, if you get chest pain, come back". I said to him in the corridor, I was like, "I'm here because you told me that yesterday. Just take paracetamol and if you get chest pain come back. I'm not going to get stuck in this cycle, like that's why I'm here, because I have chest pain." 

So that wasn't great, but then speaking to the GP afterwards she's managed to solve the rest of it. So just about…that was the one time that I felt, hang on a minute, I think…that was the one time I thought, I don't feel believed, was that revisit at A&E. But the two other times were absolutely brilliant.

So another thing like four o’clock or five o’clock, four, half four, something like this, so nearly eight hours after they give me the oxygen. They check my heart beat and they say, “Okay.”  That time my breathing come bit, okay, better than you know, like thirty forty percent but lot better than, you know, means like it’s come to a thing. I can’t explain now by talking but if you see me, means I can’t breathe that time even. I can stand up but I can’t breathe that time so then that time they say, “Okay.” I “As you say you’ve got a pain in your tummy or back, that means the side, right side of the back, we can’t do anything as we are busy. You have to talk to your GP and for further medication. We are not giving you any medication. Then your GP can see. We’re going to send the thing to your GP and you can go. You can go.”  Straight away. Not five minutes, “You can go.”
 
How you go and I am okay in their way but for my way, I can’t even stand up. You know, like after this thing happening last ten hours or twelve hours with me, my body shut down. I can’t breathe and, as I got a problem before, so I feeling that way, and they didn’t, when I got there, they take me good way, you know, because I got a problem and when they leave me, they didn’t ask me, how you go home at that time night, nearly five o’clock that time is seven o’clock, I think. “Okay, you can go home. [inaudible] the thing. We’re going to send the further thing in there.”
 
I can’t talk. I can’t do nothing [laughs]. So slow by slow I touch the thing and just come outside and this. Oh and they say, “Okay.” The test for coronavirus as well that time. A Covid thing when I go in the hospital, so they test the Covid and they say, I ask them, when and they say, “Okay, you can go home.” I just ask them, “Okay, how, when I am going to get my result?” They say me, they say, “Okay, you can get the result when you go home, next two three days, we don’t know but, if you are positive, you can go anyway.” I say, “I could be positive.” “We don’t know, your symptoms say so we don’t know. You can go home now.”

That’s what I’m talking about and after I came out of hospital, last [inaudible], which I was, they found out I’ve fallen at home five times now. They were back very fast [laughs]. They put adaption in and then the hospital people, they put in the adaptation for me and I’ve got push stool now. I’ve got a bath board, a couple of handles, in place to help me to get up. I’ve got the tray, zimmer tray thing help me move around and walking stick to help me but then the community therapist came and because I could not do certain things, I was discharged, just like that. No more continuation. So if I can’t do stairs, they can’t work with me. So, basically, means I’ve got no movement at all. The therapist in the hospital says I can do those exercises, [inaudible] exercise therapy because they gave me a lot of exercises and since I can’t do it and I get tired going to the hospital and that, they discharged me. So, basically, I’ve got no physio at all.

I started to feel slightly better [coughs] after two weeks [coughs], but I got signed off work obviously, because I wasn’t well enough to go back after the, ten days…no, it was fourteen days at that time of isolation. I still wasn’t ready to go back, so I did, on the Monday, sorry, I have to think about the days in some ways, I actually…for the first time I felt able to go out and went to visit my son, and I wasn’t right. As the day went on, I don’t know whether I’d just done too much and not realised, because I thought it…you know, it was like getting over a normal cold, but by the time I was coming home, I just didn’t feel well at all, and then the Monday, I had really bad left-sided chest…well, I thought lung pain, and it was just this chest infection that I thought in my head was brewing, because I have had pneumonia previously.
 
And as the day went on, I got worse and worse, couldn’t do anything, the pain was horrendous, so I did go…I spoke to a GP, and they asked me to go down and see them, to listen to my chest, because I said I was just getting worse. So, I did go down, and I was there for quite some time, and then she sent me through to hospital thinking it was a blood clot, because I was desaturating, I was so, so dizzy, I just wasn’t able to function very well. So, my husband took me through, and I was admitted, and I was there for three days, had a series of tests and they discovered it wasn’t a chest infection, it was actually my heart, and so they diagnosed me with…there was two diagnoses. One was myocarditis and one was pericarditis, both are inflammation around the heart. I was then sent home. By this time I was absolutely…I was a completely different person, and I normally run every single day, prior to this, I’ve run all the time.
 
Fit and healthy, I’ve got a busy life, and I was basically from then onwards on my sofa, which I’m still on now with my pillow [laughs].