I've got loads of pain down here but at the same time I'm sort of like, I'm alive, you know?
Long covid is a difficult post-viral syndrome that seems to have a number of
underlying mechanisms and cause a really wide range of symptoms.
I can't hold things, I can't open things.
Yeah, like, I look normal but I feel like my body is like totally breaking down inside.
smell is more prominent now than it was four, five six months ago.
Just held her hand ...
Tell how much I loved her.
How fatigued would you say your legs are?
They are exhausted, it's actually really upsetting.
You're worried about if you'll be able
to go back to work, i I'll be able to pick up my kids again and play with them normally.
Hello, thank you very much for coming, it's lovely to see you, I'm Dr Melissa Heightman.
and I'm a consultant respiratory physician at UCLH and we're in our post-covid clinic
where we see patients referred either by their GP with post covid complications
or patients who've been discharged from our hospital after a severe illness with covid.
So I remember you had covid back in October.
So in the beginning I think I mentioned to you,
I thought it was muscular because I'm normally quite active and I'd been lying in
bed for so long maybe about a fortnight or three weeks later, it was so bad I thought I was having
a heart attack.
I can't write, like, I tried to write a wedding anniversary card to my husband.
It took me about 40 minutes and I can't hold things, I can't open things,
My parents are in Canada,
I can't hold my phone to Facetime with them. – OK.
I can't rub my son's back when I'm putting him to sleep.
And in your questionnaire you also talked about fatigue, palpitations, muscle aches,
joint aches, tummy pain, diarrhea ...
I think I ticked everything, sorry.
Things have not been good and that's
really familiar for us as post covid doctors that people have a large number of symptoms.
Hi Larry, do you want to come on in? Grab a seat.
Thank you.
Larry, I'm Charlotte, I'm one of the physiotherapists.
We actually met a long time ago, didn't we?
When you were on the intensive care unit.
It was indeed.
It's very nice to see you today. – Thank you.
Now, how have you been since you went home?
I've made reasonably steady progress since then, the only real issue I've got is the mobility one.
But even that considering when I was first transferred from Queen Square to St Pancras,
for the rehabilitation, I was having to be hoisted from bed to wheelchair and I couldn't
even, I couldn't stand up and I couldn't certainly move at all, you know, I couldn't walk at all.
I mean, when I'm walking, you know, sort of walk as if I've had a few, you know ...
So your balance is still a bit ...? – Oh, yeah, yeah, yeah.
Which isn't a great look at half past eight in the morning.
I'm sure.
So probably one of the most surprising things to us was that we thought that the only patients who'd run into
problems would be those who'd been admitted to
hospital but that's actually turned out to not be the case and we've been learning you know as we go
along about what are the right tests to do, what's the right approach with therapists, with medicines ...
You might want to take your coat off.
OK, ready, steady, go.
20 ...
21 and stop.
... and then they've all been quite different, one of is like smelt like glue.
Hiya, yeah come through.
After you. First left.
What's amazing is, nearly a year since this all started, isn't it?
Yeah, absolutely.
April last year I just developed
a cough and bizarrely enough I was just doing some gardening and I was planting some mint,
and I couldn't smell them so I said to my wife probably the shop sent me dodgy ones because I
can't smell them at all.
It was very very bizarre, it gradually got worse, got more tired, fatigued,
lethargic cough got worse eventually ended up in casualty, recovered after about two weeks,
maybe three weeks, gradually started realising that my smell is not back at all,
what I've noticed recently is the sulfur burp taste, sort of burnt toast smell is more
prominent now than it was four, five, six months ago.
I mean, I work in the medical profession and I often, if I'm getting me in my clients I could smell
body odor or their feet, I can't smell it at all which is advantageous in a way, sorry patients.
Good, so close your eyes.
Can you smell it? – No.
Can you smell this?
No. – OK.
A couple of them just remind me what the horrible smells like when I eat cucumber.
So we're going to start at one end and then you're going to walk
all the way down to corridor, turn around, come back ...
The aim of the test is to walk as far as you can, so there's many laps in six minutes
so therefore go quite fast but I don't want you running.
Three, two, one, go.
And stop where you are.
Right now, right at the very end when you stop, how would you rate your breathing, your
breathlessness on that scale?
Eight or nine.
Eight or nine. And what about your legs? How fatigued would you say your legs are?
They are exhausted, it's actually really upsetting.
On that scale of zero to ten, so zero nothing, ten is the worst ...
Ten.
Like, I look normal but I feel like my body is
like totally breaking down inside and I know like, people would see other people walking this and
think like, oh you know she can walk like she's, you know, but for me it's not the same thing.
My wife was diagnosed with cancer on the January last year and then in
around about the middle of March, I began to feel really unwell.
All this happened in the early April and I knew nothing until the beginning of June
when I regained consciousness but then once I started to recover, I recovered
very quickly speaking to my wife three or four times a day, I've made arrangements through and
the consultancy was saying we can try and get you back to see her and then before that happened,
she took a sudden turn for the worse, I spoke to ...
the consultant at the National Hospital, he said leave it with me, they came back within
half an hour, 'we're taking you back in the morning.'
Took me back to see her
and I mean, they had to send a nurse as well to look
after me because technically I was still very seriously ill.
But I spent about two hours with her.
The ambulance people just went all through
and said take as long as you want and I just held her hand, spoke for about two hours,
just talking nonsense, telling how much I loved her.
It was a very best ethos in the national health service, it was almost almost like the reason why
it was founded it was a demonstration of that and I'll always be so grateful
to everyone at Queen's Square for what they've done, for the kindness
and the compassion that they showed, it was incredible, it was incredible.
And I'll never forget that and my wife she died the following morning, she died the next morning.
If I reflect back what we thought we would find at the beginning compared to what we've
actually found now sort of we're nearly a year down the line, it's a real surprise.
Typically the patients going home from hospital if they get the right rehabilitation support
are getting better and better as time goes on, whereas a patient with that long covid
pattern who may never have been into hospital, can actually have a much more difficult journey.
Thanks, guys, thank you.
What I hope is going to get better going forward is that we'll
recognise it more quickly, get the right tests done earlier on and get the treatment strategies
right earlier on because I think it really does make a difference to the longer term outcome.