Covid 19 lung scarring/no progress

[1212abx]

I need some advice please. My dad has been on the ventilator for 4 weeks now and they say he's needed 50L per minute supply throughout. This comes after he tested positive for Covid-19. They see not much secretions in the lungs and he's been constantly on 30 to 50% oxygen and 10-12 PEEP. He's now on 60% and they are saying that as there's been no improvement over the past 2 weeks, they are suggesting the lungs are badly scarred and that he doesn't have much chance to improve. They are starting him on some steroids though. I don't want them to give up hope and want them to keep trying.

He's on kidney machine for his blood and some heart support.

He did get to the stage where he had his sedation lowered and was breathing spontaneously back two weeks ago. Now we are back to full ventilation under sedation. There has to be hope. Maybe the scarring is not as bad as they think

[Sepsur]

I had scarring after severe ARDS - it’s nickname is concrete lung - the lung becomes so rigid. The medical staff presumed I would lose a great deal of lung capacity. After some brilliant hospital physiotherapy, a year after ICU, my lungs were fairly normal. Unfortunately a pleural effusion of my left lung through having my leukaemia ‘colonise’ this area, has left me slightly breathless but that was 2yrs later.

Some of us do repair & we can repair incrementally for a long time after discharge.

[1212abx in reply to Sepsur]

Thank you so much for your reply. There is hope for us all. We have felt some comfort in that we were able to speak over the phone with him just a few moments ago to encourage and tell him we need him back. Even though he's sedated, we feel he heard us. They've said he's pain free and comfortable

He's started on the steroids today and due to have another dose later tonight

[Sepsur in reply to 1212abx]

Let’s hope it is the start of the long haul back for him.

[FamilyHistorian]

9 months after coming out of hospital, not for corvid I have been diagnosed via X-ray as having pulmonary fibrosis (scaring) probably caused by ICU trauma and or a combination of my Ra drugs. Last Saturday I had a CAT scan and am now waiting for the results hopefully within 2 weeks. I have now started checking my O2 levels which for the last week have been between 90% and 95%

[1212abx in reply to FamilyHistorian]

Thank you for the information. Hope you get good news. It seems that the scaring is fairly common, I just hope steroids will take down swelling and let my dad breathe better, and that any scaring is not as bad as once thought

[FamilyHistorian in reply to 1212abx]

Time will tell and it does take time. Thinking of you

[DrARDS]

Hey, So sorry to hear of your traumatic experience and that of your Dad’s predicament.

Your story does resonate well with my own personal experiences (scroll through my posts).

My Dad had severe covid in the first wave and it was only after methyl predisolone did we finally see improvement to enable weaning to occur.

My Dad was in the Icu for ~2 months.

Whilst the scarring is significant and he initially required full time oxygen, it is not ambulatory and more for exertion, so don’t compare the scarring to that of idiopathic pulmonary fibrosis-that is a different entity from my knowledge and nobody really knows how the covid fibrosis progresses.

Keep strong. Keep encouraging the doctors and don’t lose hope.

It is a long haul. Take breaks, get into routines of speaking to the doctors/nurses for updates and expect fluctuations in a sea of both pessimists and optimists.

[1212abx in reply to DrARDS]

Hi. Thank you for your reply. It really does fill us with hope. I am sorry to hear about your experiences also

Trying to keep strong. I think it is the pessimistic doctors and consultants that knock us back, whereas we should be looking at positives. How long after starting steroids should they start to work so you know?

I think that some staff try to paint the negatives to cover the worst case scenario. We are remaining hopeful that he's gotten over a lot of issues and still can get through the rest

[staffan in reply to 1212abx]

Looking back to my experience of ARDS and being ventilated the medical staff were all brilliant beyond description. The professionals able to answer questions eg will I be able to walk again, breath more freely, be independent etc were the physios. They explained how being in a coma and not moving causes every single muscle in the body to lose strength. And it has to be regained slowly with effort. So my point is that in a way the experts on the mechanics of the lungs and body in my experience were the physios. I hope this helps. Keep your hopes up for your dad. Best wishes.

[1212abx in reply to DrARDS]

We got to see him today. He's so comfortable and relaxed. He's back to spontaneously breathing on 55% oxygen and 8cm/H2O PEEP. His kidneys have stopped working so the filter is doing all the work. He is also on Dexdor for sedation and steroids. I really hope he pulls through this but they've told us that he's very unlikely to, even though he looked fairly well when we saw him. He's done so well so far, and miracles do happen

[DrARDS in reply to 1212abx]

They will always sound pessimistic! We had many a difficult conversation.Please try to stay positive🙏🏾

[1212abx in reply to DrARDS]

Praying for some good news 🙏 this was another pessimistic view from them since he was first admitted. He's made it 5 weeks in ICU

[Skoda27]

Hi there My dad is week 8 in hospital and 6 of them on ITU with covid

We have been through the same rollercoaster as you are describing, oxygen up amd down, on amd off ventilator, one moment making improvements and then next taking steps back!

He’s at the stage now where his tracheostomy tube was removed on Saturday and he’s only on 2lts of oxygen most of the time, however as soon as he starts to move or they get him out of bed into the chair his levels significantly drop so he needs higher oxygen

Take each day as it comes and try to find something positive out of that day to focus on, try not to think about what if’s

It’s so hard but you are not alone, there are many more people fighting the same fight

Take care of yourself

[Cazthomp in reply to Skoda27]

Hi I’m so glad your dad is doing well. can I just ask about the coming off sedation part of how long did it take for your dad to come back around fully my mum is in icu with Covid and had her sedation removed around 4 days ago but she is making small progress but only very slightly awake thanks