Pulmonary Fibrosis -Can it get better with time? ... - ICUsteps

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Pulmonary Fibrosis -Can it get better with time? Treatments? QOL?

DrARDS
DrARDS

So I’ve been told my Dad has moderately severe fibrosis of both lungs secondary to Covid.

He’s come off the Vent now (7+ weeks) thankfully (we thought this was an incredible achievement in itself and this has been so draining), but this has knocked us again as the doctors are saying his lungs look really bad on the CT and that they cant say how much longer they’ll function.

They say like SARS it may get better or it may not and my Dad has been really upset today on FaceTime.

I’m asking those who have had fibrosis, what impact has this had on your QOL? Have you managed to defy the doctors odds? Any helpful thoughts or advice much appreciated.

Thanks

39 Replies
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There was a moment where the consultant described to my wife that my lungs resembled liver not lung. Severe ARDS meant that my lungs had gone rigid - it’s nickname is concrete lung. 4 yrs ago they were very pessimistic of me ever returning to anything resembling normal life - let me assure you that despite the ravages of critical care & all that goes with that and undergoing increasingly more invasive & life altering treatments for leukaemia- I have returned to damn close to normal. A pleural effusion last year knocked me back as had this concussion but I’ll retreat and reorganise and remarshall the troops.

Despite the ARDS & pleural effusion - I still have minimal scarring- which I believe is referred to as fibrosis(?)

Doctors are quite shocked by how scar free I am. My brother says “ you’re one lucky son of a bee - all you’ve got is a vagina cut in the front of your neck”. 🤣🤣🤣🤣

It would be naive to assume we are all the same in our recovery - I can only lay out mine. I also know that speed and recovery are connected to your age but I have the immune system of a 90yr old man - so healing isn’t my strong point.

DrARDS
DrARDS in reply to Sepsur

Love your powerful posts and defiance of pathology Sepsur!

Do you know what they categorised your fibrosis as initially ? I thought it was harsh of them to paint such a gloomy picture for my Dad when he’s just come off the ventilator.

The reality is nobody knows the long term impact of Covid.

Do you still need oxygen? What’s your exercise tolerance like? Did the scarring just stabilise then in your case?

I don’t know but they thought it would take me at least 3 yrs to be able to tell what sort of legacies were permanent.

The long term effects of critical illness are different with all of us.

I don’t know how I escaped severe long term damage to my lungs, I don’t know how I escaped long term damage to my kidneys, I don’t know how I escaped amputation of digits through sepsis. My heart may not have fared so well - but it got a battering - I’m wearing a mobile device for a week to determine whether I have a pace maker.

My pleural effusion was as a result of my leukaemia which meant 3 litres of bloody fluid was floating around a pocket of left lung - climbing the stairs had become hard but I was still in full time hard work until mid Nov last year - 2 x lung biopsies later, start of novel leukaemia drugs in Jan, I started work again only to be thwarted by lockdown. No oxygen administered - only whilst I’ve been hospitalised

It’s fantastic news he has come off the ventilator, if his lungs were that bad I wouldn’t have thought that was possible. I just don’t think they know about long term effects of CoVid. My husband recently came off ventilator after 9 weeks, has had two lots of pneumonia since (So still in ICU? and we have been told he has large damage to his kidneys which will likely be permanent. But they admit it’s a watch and see, they don’t really know if they will come back. They were convinced he wasn’t going to make it so fully admit they are happy to be proved wrong. I think anything is possible now and it will only be a year or two down the line before we know the effects on CoVid patients x

DrARDS
DrARDS in reply to RockRunner

Aw thanks. I’m sorry to hear your husband still has infections and hope these and his kidneys are on the mend soon.

Have they managed to culture some more bugs?

My Dad has had so many courses of antibiotics.

Yeh that’s what I thought. It made me so upset when one doctor spoke in very black and white terms rather than take the more speculative approach.

HopefulA
HopefulA in reply to RockRunner

Pleased to hear that he is off the vent, my dad is almost there I think. He spent 18 hours off the vent yesterday so 🤞🏼 he may be off it fully by the end of the weekend.

Dad is in his 9th week and we had been told in his 2nd week of admission that is lungs were severely damaged with high volumes of scarring and they were worried he wouldn't pull through but here we are almost there...

I agree that we do not know enough about the covid impact on healing of organs so I feel like if they can come off the ventilator then perhaps with time, the lungs can start to heal and repair.

Let's hope this is the case🤞🏼🙏🏽

Sounds like your dad is doing so well now , so nearly there . How’s his delirium now ?

Such a rollercoaster this journey for everyone . I was watching Kate Garroway interview about her husband today so upsetting when You realise how many people’s life’s are turned upside down by this horrible virus .

Such a good feeling seeing light at the end of the tunnel . Xx

Delirium still there, he does have clarity but every now and then forgets where he is or asks the nurse to call me and then asks why I haven't come to pick him up yet.

Hoping is lifts soon and that he sleeps and gets some rest as he isn't sleeping great still.

How's your dad today? Xx

He’s been doing really well last two days , little behind with his weaning after getting a chest infection last week .

Speaking to him on the phone he really is getting there now and so determined. Nurse said he been in good spirits last two days .

He’s physically doing well taking a few steps with the frame , and getting stronger in that aspect.

Think he just panics with this cough he has from the chest infection , making him feel breathless when not in the ventilator.

Just hope and praying he’s makes it off the ventilator without any more bumps in the road .

I get what you mean about the sleeping my dad is the same just a few hrs here and there even after upping his sleeping meds , think the warm weather didn’t help. The nights he’s sleeps well he’s seems to have a really good day it makes all the difference x

That's great to hear he is back on track and wonderful that he is working on his physical strength too!

Have you found when speaking to dad that he has a cough?

My dad seems to have a persistent cough which he has had since he woke up and I am not sure if that is quite normal with this? It seems to be worse when he talks so he then talks less as the coughing then makes him struggle with breathing a bit?Xxx

He’s doesn’t seem to cough when talking but as soon as he’s finished on the phone and am talking to the nurses I hear him cough in the background.

It’s all new to them learning to breath with damaged lungs and a cough , my dad never suffered with chest problems and think he finds it scary.

Who knows how long this cough will last , I wonder if some further down the line are still suffering with a cough ?

I suppose the cough could be part of the problem of not being able to sleep also xx

So I checked with the nurse and she said it's quite normal.

Chanlib also confirmed her dad had the cough and that it was encouraged to help remove secretions so hopefully it's helping get all the mucus and gunk out of their lungs xx

How’s your dad doing , any nearer to coming off the ventilator?

Nurse said to me today she was taking dad outside for fresh air and if I happened to be in the car park by coincidence that would be lovely haha. I can never repay them nurses for going above and beyond . Dad looked well in good spirits but he just said he needs to get his breathing sorted and he will be home .

Still weaning it just seems to be taking forever , he’s doing four hr session at a time now . I know you mentioned your dad did 19 hrs how long has it took him to work up till that ?

Ten weeks for my dad now longest patient and disheartening seeing people come and go , said today physically he’s stronger than most it’s his lungs letting him down 😢 xx

Hey hun

So today dad had his trachy removed which took us a little by surprise as yesterday the plan was to downsize his trachy tube and then remove soon!

My dad has been in 10 weeks today too so our dads have exactly same timeframes.

So the weaning took a while but then I think they took him off the ventilator for 1 hour last weekend and then every day have been increasing the duration. He has been off the ventilator completely since Friday am.

Don't lose hope, your dad is doing amazingly from a physical strength point of view, his lungs probably just need a little more time.

I was told 3 weeks into dad's time in ICU that his lungs were really badly scarred and they weren't sure he would ever make it but here we are with our dads really fighting!💜

4 hour sessions at a go is great and I am sure that you will see those times increase as soon as his lungs get used to it. I am so pleased you got to see him, I wish I could see my dad even if only for a few mins.

He is physically still very weak and the delirium is still there, he is just adamant he wants to come home, he only calls me when he wants to know if I am on my way to get him, it breaks my heart that I can't😢

Let me know how dad gets on, they have got this far so I am sure they will get out of there and come home to us soon xxx

Ferham
Ferham in reply to HopefulA

Fantastic news he has had the Trachy out, is he on a CPAP or just a mask for oxygen now . It's so awful when they ask for you, more so for you than them. You feel you have abandoned them, in reality they are being looked after by really wonderful caring professionals that are meeting all his needs . You will be able to see him soon , he has got this far xx

HopefulA
HopefulA in reply to Ferham

So he was just on oxygen earlier, hopefully it stays that way!

Oh the nurses are just wonderful, I guess I am so used to seeing my dad as this strong man and seeing him vulnerable makes me wobble but he is definitely strong for going through all this and will come home soon and be himself again I am sure xxx

I am so pleased for you , that amazing he’s come so far this last week . That will be a relief for your dad getting the tracheotomy removed , dad mentioned today it’s uncomfortable and can’t wait to get it removed .

Maybe once your dad steps down to a ward they could arrange a little visit outside in the gardens or something similar . Our little visit today was social distance and not a chance to hug him but just great to see him .

That does sound heartbreaking, luckily dads delirium had gone by the time he had his speaking valve. Although every time he speaks he mentions having a cup of tea he’s Desperate 😢 SALTSteam reviewing him again this week .

All these covid patients have overcome so much already we are so lucky and their determination will surely drive them forward to getting home xxx

Awww yes I will definitely ask for a social distance visit, just want to physically see him💜

Bless your dad wanting a cuppa, my dad now and then asks for a biscuit or an apple or juice and it does make me sad as he is confused and doesn't realise he can't have any of these things but hopefully the delirium will lift soon 🤞🏼xx

How's dad doing? Xx

How is your dad doing? X

He’s doing really well , walked 8 meters with his frame today without assistant . Got himself dressed washed and shaved , he’s so determined.

Having all day off ventilator and very little support of a night now . Physio said looking at early next week and fingers crossed no ventilator.

He’s being seen by SALTS team tomorrow so hopefully start introducing drinks again .

So proud of him right now and love he rings me every morning , lovely to see “ dad calling “ flash up on my screen at one time never thought I’d see that again.

How’s your dad with his delirium and his new surroundings? Xx

DrARDS
DrARDS in reply to Mccarthy0702

Amazing!

Oh love this is amazing news, what a difference in just 2 days!

His determination is going to be the thing that really helps his progress, I am so chuffed for you and him😊

So dad seemed calmer when we spoke to him this evening and nurse said he slept better last night so hopefully the delirium starts to lift.

He is very sad about not being able to stand up on his own 2 feet and that he can't do things for himself but I am trying to reassure him it's temporary and he will stand again and get better.

They have no idea what they have been through so far xxxx

Nurse said dad was struggling mentally Monday thinking he was stuck there in ICU she had a good talk to him and it’s done the trick .

They cant see progress like us , just wanting to be back to their old selfs before this nasty virus hit them 😢

Yes I know what you mean.

They have no idea how much they have been through or certainly my dad doesn't.

He is just really stressed about not being able to stand on his feet but after 10 weeks in ICU i guess that is to be expected.

Once he can start standing even if just for 30 seconds i think he will start to feel he is making progress.

Long journey ahead but that's fine, they have come this far and will defo get through the rest 💪🏼

This is so amazing 🥳

It’s been a long road and we not quite there yet , but his determination is what will get him through . 10 weeks on a ventilator is such a long time but we still have him that the main thing.

How’s your boyfriend doing now ? Xxx

He is getting there, he is only really engaging with me, moving his head mouthing words, he smiles and blows me kisses. But the nurses said that he only opens he eyes and squeezes their hands, they were surprised he was like that with me over FaceTime! They have started weaning off the vent his oxygen need is low and they have stopped some antibiotics! It’s only day 5 today after tracheostomy, we’re getting there!

Wow that amazing he’s doing so well. Must be a great feeling for you getting that response off him.

All steps in the right direction so pleased for you xxx

It’s the best feeling ever, i was so disheartened I never thought this day would come. Today the nurses said that his kidneys are so much better and he urinates on his own now, and he is communicating with them with his eyes and engaging so much more! Waiting for my FaceTime now 🥳🥳

HopefulA
HopefulA in reply to MarthaKos

This is wonderful news, so happy for you and I am so excited to hear about how he continues to recover..

Also how romantic is he, blowing you kisses 🥰 xxx

MarthaKos
MarthaKos in reply to HopefulA

Thank you so much 🙏🏻🙏🏻 I think the romantic thing must be a side effect from all the sedation 😂😂😂

Ferham
Ferham in reply to MarthaKos

This is making me so happy for you , it sounds like he is making great progress xx

DrARDS
DrARDS in reply to MarthaKos

So happy for you and others progressive news X

Ferham
Ferham in reply to Mccarthy0702

It is the most important thing and you will find yourselves reminding him of that in weeks and months to come , he is still with us, we all know we have to support in this long path to recovery , we all all getting there . x

So happy to read the progress of your loved one Lots of best wishes for you dad

Mccarthy0702
Mccarthy0702 in reply to Avaco

Thank you how’s your mum doing now ? Xx

My Mom had Trac done on Saturday successfully so relieved to see mom without tube going inside the mouth now they are giving a trail for Trach mask she tolerate for few hours. Is it the same process your dad phase too?

Still in delirium state open her eyes

I want to know how long it takes when sedation washed off completely and patient start recognizing and in this group

How many weeks patient stays on vent support?

DrARDS
DrARDS in reply to Avaco

Don’t panic! Took a good 2 weeks. Some have taken longer ! Everyone us different.

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