How does Covid recovery differ -please read

[Sepsur]

Further to my telephone conference call with NHS staff. I have to stress that what I am stating here is largely anecdotal amongst a specific critical care network in U.K.

This is also my interpretation and I have no medical training - I do have a subjective understanding of my condition & recovery thereafter.

I hope that what I write is a comfort for many of you.

Largely what your loved one is experiencing is normal for someone who has been ventilated and in a critical condition for a prolonged period of time (with some added bells & whistles - I’ll explain)

These are not definitive answers because the world of medicine is discovering all of the legacies of this disease & it is such early days to draw absolute conclusions. There are so many unanswered questions like what vital role does a vitamin D deficiency play in severity of infection, is it genetic, what causes the cytokine storm?

(a) Why is my loved one taking such a long time to wake up after sedation & why are they taking so long to be responsive once they’ve woken?

Firstly - because your loved one is so ill the added complications of kidney or liver failure mean that the sedatives used to paralyse the patient are taking much longer to fully leave the body - even under normal circumstances this can take weeks - dialysis slows it more.

The new development is this : because many of your loved ones are being proned ( and proned frequently) the staff are having to use more and different paralysing agents to synchronise the patient most effectively with the ventilator - hence more sedative - less responsive and slower to wake. By using more of these drugs,

increases the chances of ICUdelirium, neuropathy & myopathy - (most of these post coma symptoms are temporary).

There is an additional factor at play at present. There is a shortage of certain effective sedatives, especially the ones with least side effects) so medical staff are having to resort to using paralysing agents that have increased hallucinogenic properties. It would appear ( not proven) that the disease causes delirium too - anyone with a very high temperature in the past might have experienced mild symptoms.

I know a great proportion of you are concerned that your loved one is confused & disorientated - this may answer this in part too. They are having to use the nasty sedatives because of over subscription everywhere.

I dreamed vividly that the medical staff were experimenting on me, so be prepared for some outlandish tales especially if the staff are in full PPE - incidentally, many of the staff are pinning a photo of themselves to the apron so that the patient has a personal connection.

(b) Why is my loved one taking so long to ween off ventilator?

I was told that the majority are behaving no more precariously or slower than a great many critical patients with respiratory issues. I certainly struggled.

Imagine losing upto 2kg of lean muscle everyday you were ventilated. I lost over a 1/3 of my body weight in the 50+ days I was comatose. Acute muscle lose interferes with the patient ability to do any physio - it takes so long to build the muscles in your chest which you need to breath. Because Covid is a respiratory affecting virus, the shortness of breath makes it difficult for the physios to ween effectively- they are having to do it so slowly - especially with patients with ‘concrete lung’ ( a legacy of ARDS) So the physios are struggling to get patients physically strong enough to tolerate weening.

What they are especially concerned with is that patients don’t decondition & deteriorate on wards. The ensuing chronic fatigue associated with acute muscle loss hinders effective physiotherapy. A patient needs to gets stronger to start moving around, moving around fires up the body’s natural functions & rhythms, if they are too weak to tolerate even sitting up - they remain more vulnerable - it’s an awful vicious circle.

Everyone felt that we were too close ( the whole world) to draw conclusions over whether Covid patients need specific physiotherapy, emotional or psychological help. The shortness of breath is causing patients high anxiety but talk to anyone with COPD and they will explain how terrifying it can be to not being able to breathe properly.

There is more evidence that people isolating & recovering from Covid at home are showing signs of greater anxiety & depression - but there is every reason to believe that this is as much to do with the physical isolation of lockdown and the trauma of feeling bloody unwell rather than a perculiar result of Covid 19

Medically - it would appear that they are requiring to use more anticoagulants, I didn’t get a full picture if this was to counteract the thrombotic complications associated with ARDS, vascular dysfunction or dysregulated inflammation of the lungs, renal complications solely or because of all of these factors in some degree.

Well I hope this answers some questions

Best wishes to everyone

[Rgsable]

Thank you for sharing

[Sepsur in reply to Rgsable]

Anytime 😀

[Avaco in reply to Sepsur]

Thanks very informative

[DrARDS]

Thanks for sharing

[avnipiro]

Thank you

[beardy_chris]

It is, perhaps, worth reinforcing the comments about ICU delirium and/or hallucinations. If you have them, they can feel very real. I was lucky that mine were mostly benign but I would imagine that, if they weren't, they could be really scary. Be encouraging and supportive and don't be too shocked at weird things patients may say or believe.

[thirtytwo]

What an amazing post. Can you tell me more if you don’t mind . Or have I missed a post saying what happened. 50+ days in a coma. Are you out of hospital now? How long after being in a coma did you spend in hospital recovering?

I hope you are well now l 🌈

[Sepsur in reply to thirtytwo]

Thank you, I’m glad you found it helpful. I woke after 57 days - I remained in ICU for another 33 days. Although I didn’t have Covid, I suffered from every complication associated with Covid and the recovery after - I overcame avian flu, strep A, sepsis, septic shock, multiple organ failure, (kidney, heart & lungs)double pneumonia, severe ARDS, hypoxia, I was proned multiple times, intubated for 8 wks, on dialysis for 7. I had a trachy fitted for 2wks. Overcame numerous hospital acquired illnesses including VRE, CMV, MSSA, EBV & glandular fever whilst in ICU. I was diagnosed with Leukaemia whilst in ICU. I spent months of physio learning to sit, stand, walk, eat & drink as I started the long road recovering from acute muscle waste, chronic fatigue, delirium & ICU acquired weakness, myopathy & neuropathy. Afterwards, I showed all of the signs of PICS.

I entered Ibrutinib/Venetoclax ( immunotherapy & chemotherapy) arm of FLAIR trial January 2020 at The Christie, following a pleural infusion. Previous steroid treatment flipped me into type 2 diabetes so I am on the super vulnerable register and am presently shielding- what many people assume is that once the patient wakes, everything will be fine & dandy - it is such a long haul back to a new normal.

I live very normally & happily

[thirtytwo]

Wow !!! You have been through the wars. I suppose I’m at the stage of wondering how the hell his body will recover. You mention acute muscle wastage, chronic fatigue, delirious, etc. Do you still have a memory of your time being weaned from sedation and all the physio they were doing.

I don’t really have words to express how amazing it is to hear that you have recovered from all this.

I hope that you are free from illness now.

Thanks again and please stay safe.

[Sepsur in reply to thirtytwo]

I have a vivid recollection of my time coming off sedation and starting physio. For our families - hell started the moment we went into ICU. For patients, hell starts the moment we are conscious. I remember being hoisted into a ‘reclining’ physio chair for a few hours ( it felt like days) I was unable to meaningfully communicate and I was fairly compliant because of sedation. I didn’t have the wherewithal to tell nurses that this posture was agony. Firstly, not only had my muscles ‘dissolved’ but they had also shortened so my joints were agony. I had also lost so much weight that the pressure point at the base of my spin was excruciatingly painful. ALL THESE DISCOMFORTS WERE TEMPORARY - but they take resilience & determination to overcome. Your loved one will need all your encouragement & understanding on the road to discharge. Look after yourself - you will need all your strength & true grit.

P.s - i renamed physios with nickname psycho-terrorists 😀 - in truth - they put me back together again.

[thirtytwo]

Oh wow, how have you been able to process all this? Did you get counselling. I’ll be honest I’m finding this part of the journey very difficult. I am lucky that I get video calls and I can see him , but in turn I can see how anxious and agitated he is. He had a trachy so he can’t communicate either. He has good cognition though and I feel he can communicate when he’s in pain or uncomfortable and the nurses are amazing to lip read and anticipate what he needs.

I try to reassure him that he’s safe and that they will get him through this and he was sick and is much better now. Is there anything I should say to him to help him, what would have reassured you?

You mentioned this dreaded chair and can you believe it was mentioned to me yesterday that this is the aim for Friday. I presume it’s some sort of step to progress to get him sitting. Again is there anything I can do?

I really appreciate your honesty thank you so much for taking the time to message me.

Just also wondering how long ago did this happen to you, you sound like a very tough, determined person.

[Sepsur in reply to thirtytwo]

Weirdly I processed it as I went along - I had all the psyche evaluations and scored low whereas my wife & youngest daughter scored really high. They both needed extensive professional help which does not seem accessible via NHS.

It was important for me to connect physio ( and doing it) with the move towards discharging home.

My wife was able to be there to encourage me & help motivate me - you are fighting an exhaustion which is indescribable

[thirtytwo]

Hello again. My partner was in the dreaded chair. It’s funny how you mentioned it and then there it was. They are also using a tilt table which sounds equally as bad.

I read you only had Trachy for 2 weeks, is that quite fast to be weaned off ventilator? I’m only saying that from reading other people’s stories.