Severe Scarring From Pneumonia

[ForMyPapa]

Hello,

First time posting in this group! I have posted about my dad who is in his late 70s in ICU for severe pneumonia in the ICUsteps group, 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.

[Patk1]

In Yr situation,I would take one day at a time xx

[ForMyPapa in reply to Patk1]

Yes. That seems like a better approach... Thank you.

[Patk1 in reply to ForMyPapa]

It must be hard for u + worrying,don't look ahead yet, talk to dad,he will know Yr there.that really is enough,for now xxx

[ForMyPapa in reply to Patk1]

You are right. He is more awake these days and really enjoys when we visit. I feel lucky every day when I get to see him.

[ForMyPapa]

Thank you. I will definitely give them a call. Although everyone's situation is different, it is still encouraging for me to know that some people here are managing with some scarring.

[ForMyPapa]

Oh, wow. Thank you for sharing. It seems like there are many ways to cope and improve..... I will definitely keep on encouraging my dad and also do everything to find him the right help. I will be so happy to do exercise with him as well... We can turn that into a family activity even... Thank you.

[O2Trees in reply to ForMyPapa]

That's exactly right, FMP - having your support and encouragement to exercise will help no end and be brilliant for your dad. Just take it at his speed, and maybe ask to speak to his GP and a respiratory physio to check how and when he can start. Good luck!

[ForMyPapa in reply to O2Trees]

Thank you! It would really be my pleasure to do anything with him as long as he is with us. I will keep in mind that we have to mind his pace.

[Hidden]

The white shadowing can actually be the way that the pneumonia shows. Many different conditions have white shadowing or scarring. I have bronchiectasis which was caused by many pneumonias in my first six years and you should see the scarring in my lungs! I am 72 now and have had a very full life. The best thing you can do is to help your father to take care of himself during his recovery and to enjoy doing whatever activities he feels up to. Keep an eye out for symptoms that the pneumonia hasn't been cleared up completely - cough , sputum, pain when breathing, temperature and do get back to the doctors for more antibiotics if this happens.Pneumonia takes a long time to get over,and he will be easily exhausted. Don't worry about what people reading scans and xrays tell you. It is how he feels that is important and I am sure that with your care he will get along fine.

[ForMyPapa in reply to Hidden]

Thank you so much for your kind reply. Your story gives me and my family lots of hope. We were really confused today when we were told that he is doing well enough to start weaning off the vent as now requiring only minimal support, but his CT scan was really bad. It devastated me. But it seems like there is still a way forward and different strategies to make it better as everyone here mentioned. I am taking up on your kind advise and just going with how he is feeling. He is thirsty but feeling good. He is eager to look through his cellphone to see what he missed out while he was asleep. I will watch out for pneumonia symptoms and carefully monitor him. I will also learn it with him so he can be self-aware. Thank you again.

[Hidden in reply to ForMyPapa]

All the signs are good. Being interested in whats happening, wanting to eat and drink also. In fact, the more he drinks the better. His sats are really good and the sooner they can get him off the ventilator the better. He is just at the beginning of his recovery journey and with a good diet, gentle exercise, keeping his lungs clear of any mucus which lurks in there and gentle breathing exercises there is a good future.

[ForMyPapa in reply to Hidden]

Thank you for being so inspirational and giving us such hope. It means so much to me. I am wishing you many more years of good health and happiness.

[ForMyPapa]

Thank you so much for your kind reply. Your story gives me and my family lots of hope. We were really confused today when we were told that he is doing well enough to start weaning off the vent as now requiring only minimal support, but his CT scan was really bad. It devastated me. But it seems like there is still a way forward and different strategies to make it better as everyone here mentioned. I am taking up on your kind advise and just going with how he is feeling. He is thirsty but feeling good. He is eager to look through his cellphone to see what he missed out while he was asleep. I will watch out for pneumonia symptoms and carefully monitor him. I will also learn it with him so he can be self-aware. Thank you again.

[Yumz199725]

I'm so sorry to hear 💔😔. Have they said if there's anything they can do to help your dad?

[ForMyPapa in reply to Yumz199725]

Thank you. They mentioned that they can't really do much once the lungs are damaged, but they are surprised how good his saturation is and despite the CT result, they think he can star the weaning process. They are adding more physiotherapy too, so I guess that can help him...

[Alberta56]

For what it's worth my father was diagnosed with emphysema back in the 1970ies when help with lung problems was crude compared with today. He lived to be 84 in spite of his lungs, according to the doctors, hardly delivering enough oxygen to keep him alive. I hope and trust your father will live a full and happy life for a long time to come.

[ForMyPapa in reply to Alberta56]

Thank you! Your father must have been a very strong person! I do think my dad will be more motivated to get better and stay active once the sedation fades away completely.

[Alberta56 in reply to ForMyPapa]

Encourage your dad to keep active once he's on the mend. He's got a lot of living to do.

[ForMyPapa]

Oh, thank you! I have Whatsapp so I will try that.

[Miltch]

Hi, I hope your dad is ok.

My dad went into ICU on a ventilator a couple of years ago, after catching covid. We were told time and time again when he was on the ventilator the damage on his lungs and the scarring is so bad. He’ll always need oxygen and they’re unsure how he’ll breathe without help. Both his lungs collapsed and he had pneumonia twice and sepsis all from covid! No other health problems and never smoked.

He was on the ventilator for 5 months and in hospital for 1 year! It was horrendous. Now 2 years later, he’s driving, back to work and his oxygen is between 97-99 every time I test it. It’s better than mine! He doesn’t need oxygen He’s amazing. Don’t be too worried, the doctors always tell you the worst case scenario. The lungs do heal and scarring can diminish. My dad has got scarring and does get out of breath but he’s alive and doing well, praying yours does too. My dad is also in his 70’s.

[ForMyPapa in reply to Miltch]

What?! Really??? That is truly amazing!!!!! Wow. I hope doctors will study your dad's incredible resilience... While I know that everyone is different, this give us lots of hope!! Thank you so much for sharing. I am going to tell my mom. She will cry. Thank you again.

[Gingerninjas]

thinking of you …. And your family . Be kind to yourself and take one moment at a time , 💜

[ForMyPapa in reply to Gingerninjas]

Aww. Thank you. I have forgotten self-care and having terrible skin now, but I will slowly go back to my normal routine now.

[ghousrider]

good morning i am ghoust rider in england i am 59 years old male when i was 51 i had something simular to your family member they called copd i was in i/c/t/u for a few weeks lot of support from family and friends i had 3 mths of work i got ebuliser now at home trying for a normal life i think your family will be ok /talk to him you be good i have a tracky in my kneck the doctors will tell you more about it but you be good best tonic for your family member is get them home i picked up got on my feet better now i do light excerises every day at gym to help with my breathing have a good day sending all my love ghoust rider

[ForMyPapa in reply to ghousrider]

Thank you for your reply. I am happy to know that you recovered well and taking such good care of yourself. It seems that everyone agrees on the importance of exercise and physiotherapy. I will definitely encourage my dad to move his body and we will do it together.

[ghousrider in reply to ForMyPapa]

ghoust rider again yes look after your father he seems a good person all the best

[Greenthorn]

It is so reassuring to read through all the responses to your post. We are ordinary people but with wonderful stories, and as a support group we are really strong and sympathetic. The forum also has members who provide humorous anecdotes, occasional humour and photos and paintings. So please keep in regular touch and I hope your dad and you have an extended road ahead.

[ForMyPapa in reply to Greenthorn]

Thank you so much for your kind reply. I am totally feeling everyone's generosity and so benefiting from everyone's stories and wisdoms. I wish this virtual village were real. I would move.

[jhorsf]

Everyone is different, after the ventilator will take months to get stronger as it leaves you very weak don't expect too much for a few months it's a long recovery

[ForMyPapa in reply to jhorsf]

Thank you for the heads up. This is so new to us and I am learning a lot from everyone here. This has been super helpful for my dad as well. For example, we have been explaining him about ICU delirium that he doesn't have to be scared as it will go away eventually. We feel a lot more prepared and informed thanks to everyone. I will be patient while he fight off this illness.

[jhorsf in reply to ForMyPapa]

It's a very confusing place to be in when they put you in a coma and wake you up.Try not to worry just take things day by day many of us have been where your dad is now and pulled through .

[ForMyPapa in reply to jhorsf]

Thank you! Today, he was more awake and communicated a lot more! The nurse also showed us a picture of him sitting up for 15 minutes as part of weaning process. It's still one small step at a time, but we are relieved a little and happy.

[jackdup]

wishing you well and will pray your father improves and will eventually be weaned off of the ventilator

[ForMyPapa in reply to jackdup]

Thank you so much!

[Barb7654321 in reply to jackdup]

Prayers for you all🙏Stay strong and be patient ❤️

[ForMyPapa in reply to Barb7654321]

Thank you so much. He is doing much better. Now, weaning off the ventilator.

[jackdup in reply to ForMyPapa]

That is good to hear and hope all goes well.

[Germantara]

Sorry ta hear you're dad is having a very bad time I understand the stress and worry you will have I can relate to how you feel I do hope you're dad recover he in the right place in hospital take every day as it comes I wish you're dad a good recovery and take care

[ForMyPapa in reply to Germantara]

Thank you so much! It's such a rollercoaster ride, so it's nice to connect with people who can relate.

[Bbking123]

Look into Serrapeptase for lung scarring.

[ForMyPapa in reply to Bbking123]

Thank you! I will look into that.