Damaged lungs after ARDS

[Emrad1909]

Does anyone on here have experience with severe ARDS after pneumonia and having damaged lungs as a result? My mother is still on a ventilator - it’s been two and a half months. She spent 53 days on ECMO to buy her time to allow her lungs to heal. They’ve said that the lungs are scarred and they don’t know how well they will function. They’re just trying to slowly wean the ventilator - problem is that she’s so weak from being in bed for so long so they basically have to retrain her how to breathe.

Just curious to hear from anyone if they have experienced lung damage and what your life is like now?

[Amberferry]

Hi Emrad, I’m sorry to hear about your mum. My mother went through similar with a bad double pneumonia and sepsis and ARDS. It took her 1 month in ICU and another 2 months in hospital before she was finally able to return home to continue rehabilitation from home. It was touch and go for a long while. 2 steps forward 1 step backwards sort of situation. Eventually, She had to learn how to stand, walk, talk, write and the eventually swallow again ( the last took the longest but the entire healing process took a long time). She could eventually be without oxygen support and is now mostly independent. However, she is in general weaker and is often short of breath but she’s been given a second chance at life and is grateful. It’s been 8 months since she’s out of hospital. Hang in there, your mother can get better - it takes a lot of patience and some good and bad days. I wish your mum and smooth and full recovery.

[Emrad1909 in reply to Amberferry]

Thank you - glad your mum had a good outcome! It’s been three months since mum has been sick - 3 months in ICU on the 17th. It’s crazy. I just hope she is able to have a somewhat decent quality of life. I guess one thing is she wasn’t much of a walker and didn’t get out and about a lot so hopefully she doesn’t get too depressed being less mobile. She has so much family support to help get her through it. Just hope we get to support her... she’s still not out of the woods. Thank you for your message

[Amberferry in reply to Emrad1909]

All we can do at this stage is be with them and pray for the best. You may be able to do some bedside physio and massage. We brought in her favourite hand creams and lotions with different scents so they could engage her senses since she couldn’t do anything. Is your mother in an induced coma? We also recorded plenty of videos of grandkids etc so she could hear them even if she couldn’t see them. We brought in her pillows etc.. anything we could to help her feel more comfortable. Her actual physio sessions were really tough - she had anxiety whenever the physiotherapists came to visit in ICU. If you can try to be there for the sessions, it may help. We found my mother tried harder with encouragement from family. Keeping you and your mother in my thoughts.

[Emrad1909 in reply to Amberferry]

She was in an induced coma for two months. They would lighten the sedation here and there but for the most part she was heavily sedated. They weaned all of the sedation around two weeks ago and she seems fully awake now but soooo weak so it’s hard to know if she’s still a bit out of it or just really fatigued. Yes that sounds good! We take the grandkids in to see her when she’s awake but they’re not always there so videos are a good idea. Particularly of my bub as she’s 9 months old and she was only 6 months old when mum got sick. So she’s changed a lot - but I also don’t want to stress mum out and her see my baby and realise it’s been a long time. They told her she would be on the ventilator for a few days and then everything happened and here we are. The physio does look extremely difficult - and today she seemed to do better when my dad was with her and he made the comment that he would like to be there for future physio sessions as he felt it helped.

[Rosie_cheeks]

My dad was similar. Was on ecmo too but for approx 3 weeks. He was in icu/hospital/rehab for a just over 3 months and then continued his recovery at home. 18 months on, he is pretty much back to his old self. Lung function is about 80% but he is back to golf and can do most things he used to, although he does get tired. Not sure how old your mum is? Dad is coming up 75 now. Oh, he also had a tracheostomy, which you've not mentioned with your mum?

It may take lots of time but your mum can get better. Good luck 🍀

[Emrad1909 in reply to Rosie_cheeks]

Thanks for your message. Mum is only 64, she’s completely healthy otherwise... no other problems. It’s heartbreaking to think that this can happen from the flu, you see the stories and you think, well maybe that person has other conditions which made them more susceptible. But no, it doesn’t discriminate - can happen to anyone. There’s a boy in the room next door to mum and he’s only 24 and he’s on ECMO from the flu. That’s so good to hear about your dad, that he’s back to golf etc. You would assume that a lot of people wouldn’t have the exact same lifestyle but I’ve been worried that mum will be unable to do anything at all. So hope that’s not the case. But we have to get there first - she’s been ventilated for almost three months so there’s risks of infection etc. Yes she does have a trachy, got it quite early on. Thanks again

[Rosie_cheeks in reply to Emrad1909]

Same with my dad, perfectly healthy prior to the pneumonia.

I know how hard it can be to stay positive. But your mum has age on her side and its good that she didn't have other underlying problems. Dad couldn't move even a finger when he first came round but with physio he gradually built up his strength again. Your mum will probably be the same. She is in the best place for now. I wish you all the best.

[Dollyplum]

Hi hope your mum is doing well. I had double pneumonia, flu and sepsis 2 years ago. Lungs were damaged so now I have bronchectases due to the above. I struggle to walk long distances abs get v breathless. I was in an induced coma for a month and it takes a good while to get back on your feet. X

[Emrad1909 in reply to Dollyplum]

Thanks for your reply. I’m sorry you had to go through that. Mum is stable - but they’ve said it’ll be a very long and slow process so it’ll be a long time before we even know if she’s going to be ok. Hope she’s able to survive with a decent quality of life.

[Dollyplum in reply to Emrad1909]

I had to learn to walk and eat again after the tracheotomy. It’s taken time and been a big toll on my hubby and 3 children (19,15,8). But she will stabilise and slowly regain strength. I had home nurses 3 times a day for a few months and that at least helped me to sleep in my own bed with the aide of a stairlift. It really does take time but she’s made it thru the worst bits already. Hugs

[lonleyhelpless in reply to Dollyplum]

Hey, was your tracheotomy temporary??

[Amy0418 in reply to Dollyplum]

How long did you have your trach? How long did it take for you to walk and talk again? Congrats on your recovery! You give me hope for my brother.

[Emrad1909 in reply to Amy0418]

All the best to your brother! It’s such a tough time on everyone

[Yellow023]

My mother is is a medically induced coma due to swine flu virus that attacked her lungs and turned into an phumonia. Her lungs arent functioning on their own yet. But it is effecting her lungs now. Any update on your situation? My mother is still in the ICU and medically induced today will be her 5th day in thr hospital.

[Emrad1909 in reply to Yellow023]

Sorry to hear that. Unfortunately I don’t have a positive update. Mums been in ICU for a 100 days today. She was slowly tracking in the right direction but last week got another pneumonia infection. The doctors don’t think she will make it.

All the best for your mum, hopefully she has a great outcome. Look into ECMO in case it escalates to that you may need to suggest it to the doctors as patients have a better prognosis if they go on ECMO earlier rather than later. But hopefully it doesn’t come to that.

[Yellow023 in reply to Emrad1909]

Ok, I will definitely look into that. I'm sorry to hear about your situation. My prayers will be with you and your family.

[Emrad1909]

I know that one day, someone’s loved one is going to be searching the Internet high and low looking for answers to these types of questions. So I wanted to update the outcome and let you know that my beautiful mum passed away last night. She fought for 101 days in ICU but she has the worst luck from the beginning. She went on ECMO, had internal bleeds which required multiple procedures. She had blood clots. And then she got an infection and her body just couldn’t cope. A part of me died with her.

If anyone is ever in a similar position and wants to message me with any questions - please don’t hesitate.

And I am so sorry that you are in the position where you are searching for answers. As I know first hand, it’s one of the worst times in your life. Rest In Peace, Mum. I love you.

[Dallas_718]

My mom is currently has ARDS I’ve been trying to research more about it I’m very worried. I’ve read through some of the replies but still trying understand if and how it could be survivable.

[Emrad1909 in reply to Dallas_718]

Hey - I’m so sorry to hear.

I strongly suggest looking up this group on Facebook and joining. Put a post up - you will get so many responses and some of the stories are really uplifting. So many people were given such a small chance of surviving and they did!

It’s called -

ARDS support page for survivors and families of victims-information

Ask anything, everyone is really supportive. All the best for your mum and your family.

[hansbandu in reply to Dallas_718]

I spent 26 days in hospital, with 17 days in ICU due to pneumonia , ARDS and MRSA. I spent 11 days in a drug induced coma and was on a ventilator for 13 days. When they woke me up, I was so weak i could barely hold my head up without help. After awakened, physical therapy would come into ICU and lift me, via a hoyer device, to what can only be described as THE most uncomfortable chair on earth and I would be required to sit in this for two hours a day, 2 times a day. After the tube was removed, I had to learn how to sit on the side of my bed without assistance and then to stand up and walk. I have been home from hospital for a month now. Although I still need a walker and I'm on oxygen, I'm doing better. I have physical and occupational therapy four times a week thru home health and this has helped increase my strength but I still need to work on increasing my stamina. I have good days and bad and will probably need oxygen for a couple of months but my docs don't expect me to need oxygen permanently.

Another thing your mom may have to deal with is ICU delirium. When I was awakened from my coma, I was surprised to learn i had been asleep...I had been living in an alternate universe where I was fighting for my physical and emotional safety ...when I woke up, I was genuinely terrified of the nursing and medical staff because they had been abusive toward me in my delusion. My doctor said that ICU delirium is very common in patients and can lead to anxiety, depression and other symptoms of PTSD. If you notice that your mom is not "all there", speak to her medical team and ask for resources to help her and you deal with this.

Just know that ARDS is surviveable...I'm 55 years old and I live alone and I'm doing as well as can be expected. I'm able to take care of most of my daily needs without assistance and I'm getting stronger every day. Good luck.

[Jellybean2019drawing]

I'm so sorry for your loss. My brother is on ECMO in ICU at the moment. It's only been a week so far but looks like he/we have quite a battle ahead.

[Emrad1909 in reply to Jellybean2019drawing]

I’m sorry to hear. It’s such a rollercoaster. Hopefully your brother has a quick recovery and can come off ECMO soon. If it’s for his lungs, and if he has ARDS, I suggest you join the above Facebook page that I spoke about in the previous message. It helped a lot.

[Emrad1909]

Thank you for your replies. Sadly, we lost mum 6 weeks ago.

[hansbandu]

So sorry for your loss.