I have posted about my dad who is in his late 70s in ICU for severe pneumonia here before, but here is the current situation. At the moment, he is stable and he is close to weaning off sedation completely and starting ventilator weaning (trachy) soon. His ventilator setting is O2 35%, Saturation 93-96%, EtCo2 45-60, PEEP 5, pressure 17-19.
Today, we were told that his CT scan is looking really really really bad (almost all white and cloudy). In fact, the doctors don't really know how he is managing to keep 93-96% saturation with a relatively low ventilator setting. But because he has been stable for the last couple of weeks, they are going to start the weaning process slowly.... They also told us that the scarring / fibrosis is permanent.
I just don't really know how to take this news and prognosis... I am so happy and grateful that he survived this horrendous hospital acquired pneumonia and he doesn't seem to have any other complications at the moment, but the CT scan looked really bad to me as well. It was all white.... I just don't know what this means and if he is going to be ok weaning off the ventilator... The doctor today said it is a miracle he is breathing with this lung condition. This is really scaring me....
Is there anyone who were told that his / her lungs are damaged so badly but recovered ok? I just want my dad to have a comfortable life even if it not as active as before.... I would appreciate any positive anecdotes or encouragements... Thank you for reading.
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ForMyPapa
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I don’t want to give you false hope - my lungs were ( at times) like your father’s but I was 20yrs his junior.
The scarring looked permanent but it mostly dissipated over time. The only long term scarring was bottom of my left lung. 3 yrs later I had a pleural effusion on that side.
I do have some scarring still & some breathlessness but it not as severe as I was warned.
Thank you for your reply! Honestly any hope is good at the moment even if it false hope. We are grateful that we still get to see him today and now we can communicate a little. I heard from some people that the scarring could change / reduce in 6 months or in a year too, so I was wondering... I really hope my dad's case is like yours. Wishing you many more years of good health and happiness.
I was told I had lung scaring from my pneumonia, though I don't really know how bad it was/ and is now. It was enough that when I had an x-ray month or two after my ICU stay, the radiologist thought I still had pneumonia.
A year and a half later, and I can still tell my lungs are not what they were. I can feel the sensitivity/tingling, but it does seem to be improving, though to be fair, it could be my lungs gaining capacity, despite scaring. I haven't had an x-ray recently to know if there is a potential for healing or not.
Thank you so much for your reply! It's great to hear you recovered well and are managing a year and a half later. This gives us lots of hope. Despite what they say about scarring being permanent generally, I do wonder if that is the case for some people..... But maybe it doesn't really matter since while it is not 100% yet, you are feeling better now.
Firstly, I wish I had something more helpful and comforting to say. This is one hell of a journey, and it is emotionally and physically exhausting.
Secondly, my Mum is similar in some ways, she had a tracheostomy yesterday. My best advice would be to talk to your Dad’s physio. I think they are best placed and experienced in what these illnesses look like in reality in the long term. If that makes sense? I think because they work closely with patients over a longer period of time, through the different stages of a serious illness (not just ICU) they can roughly translate what the illnesses look like on paper to what it looks like in reality. I’m not saying the doctors aren’t good at what they do. But I think the doctors generally focus on the wort case outcomes at any particular time, to not give you false hope or expectations.
I had a wonderful chat with my Mum’s physio just before her tracheostomy. She explained what to expect after the trachy, what the next steps would be in reducing sedation, what the immediate goals in physio and rehab will be. Because she has worked with my Mum the entire length of her admission (5 weeks) the continuity has been beneficial as she’s been able to see improvements in her condition. The doctors often focus on the worst outcome, the nurses are focused on the immediate now (because that’s their job) but the physio was able to give me a realistic idea of what things may be like. It didn’t feel such as bleak as what the doctors have been saying.
Please take care, and I’m always here to chat if you want a friendly ear who’s going through similar.
Thank you so much for your reply. That is such a good idea to talk to the physiotherapist. We have met him a few time while my dad was getting a massage and had some casual conversations but nothing more formal. I will put in a request this week! I do hear from everyone that generally speaking, physiotherapists are more focused on increasing patients capacities and sound rather positive.
Well .. as you know I’m a similar age to your dad and I too have scaring and reduced functionality and I now have pulmonary fibrosis.
To be honest there is no point dwelling too much on it. I have seen thoracic medicine (the chest doctors) he was quite open about it and said …”we can’t cure it but will do our best to make sure it doesn’t get worse” on top of that I now have sleep apnoea which means I have to use a CPAP machine at night.
I monitor my sats. I’m not a medical person but for me my SATs are +- 90% some times it goes up to 94% and sometimes as low as 86%. So it is useful to know this so that when I’m checked by a medic I can tell them what is normal for me otherwise they start talking about being admitted to hospital which I wouldn’t want.
In fact I am due for an op and we have already had this discussion.
Thank you so much for you reply. This is very new to me so I really appreciate you sharing. I think my dad can definitely manage some of the routines you are describing and of course, we will be there to support. It's such a great practice to have open conversations with your doctors and know your condition well so you can describe it to others!! Your family must be so relived that you are such a high functioning person and taking care of yourself so well! This is all very inspiring to us. Thank you! Wishing you many more years of good health and happiness.
I am 20 years younger than your father, and had a roller coaster of ever-worsening health.....catching covid, leading to covid-pneumonitis, then ARDS where my lungs just packed in and I was put on ECMO, then a pulmonary embolism, and hospital-acquired-pneumonia thrown in too.
It took time to bring me out of my coma after many false attempts where my blood pressure rocketed, and it had to be abandoned. I was also weaned on a trachy for weeks, and then still kept in ICU, then ECU, for a long time after it was removed.
So, 2.5 years on, it has left its mark on my lungs, which is only to be expected after the pounding they took, and the same will be true of your father.
I have bibasilar atelectasis, which is collapse of the bottom part of my lungs, and some scarring in other parts. However most of the damage areas caused by fluid build-up in my lungs has receded. AND my total lung capacity has inched up from 0% in my coma, to 50% of normal on hospital release, to 70% now, where it has plateaued. I am grateful to have what is in effect roughly 1.5 lungs.
I write all this to show that it is usual after such lung trauma for there be some ongoing damage, and also to offer you some hope that things do settle down and start to slowly improve, although as you recognise it may not get to where it was pre-illness. I wish him all the best.
Thank you so much for your reply! This is all so inspirational to us! My dad was also diagnosed with ARDS. We will be very happy if his lungs can recover up to 70% of their initial capacity. It's so great to know a lot of people are managing.
Weaning off the sedation business has been really rough for us. Your family must have been so worried for you too. My dad is finally starting to communicate a lot more in the last couple of days, so we are finally starting to feel like he is back. I feel like no one is really prepared for this but this group, reading the past posts, and hearing everyone's experience have been so helpful. I can help my dad prepare and explain better. Thank you again! Wishing you many more years of good health and happiness.
Thinking of you I know how difficult this is being on the relatives side for my Dads prolonged stay in ICU… we were there for around 90 days and the issues primarily with his heart with bug lungs taking severe damage as a result of fluid build up, multiple pneumonia, resistance to Anti Biotics and several hospital acquired infections. The doctors are presenting the facts as they see them at the moment and are always cautious to give any indication on recovery or prognosis of the patients in ICU for prolonged stays (my opinion). If your Dad is beating the odds at the moment, then he’s showing you his determination to get better, and sounds like previously he was really fit and healthy this will be working to his advantage, my Dad was the same, 65 y/o male with no commorbities and very active and healthy life style. Time is a healer, and be encouraged by the improvements he has shown since a few weeks ago, they have managed to wean him down on his oxygen support and are now looking at trachi weaning, that’s a lot further on from when we last spoke. As many on here say, recovery is a long process and it’s slow and steady return to a ‘new normal’ in many cases. Keep having faith hun, I pray for your Papas recovery x
Thank you so much for your reply. Yes, you are right. He has made progress and we are so grateful. I shouldn't forget that. He has been off sedation for two days now and for the last few days, we were able to communicate with him through nodding etc.. It feels like he is back. I will be patient and try not to freak out too much. He is, indeed, breathing ok despite the odds. Please say hello to your incredibly resilient dad from me.
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