ICUsteps
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Dad is fighting ARDS, I'm so depressed

Since Feb 21, my dad (73) is in the hospital on the intensive care unit, with a case of pneumonia in both lungs. He didn't have any trouble before, only some cardiac arrythmia, under control with medicine. Some shortness of breath started on the 16th, which we all took to be a side effect of a recently changed dosage of the cardiac arrythmia meds. He has been kept asleep and is on life support equipment. The inflammation of the lungs has not improved significantly, despite trying antibiotics and corticosteroids. The doctors don't know the cause; on the 26th they took a biopsy from the lungs, but no known pathogen was found.

The medical team does their very best to help him. Yesterday they confirmed it as ARDS with a very slim chance of survival. My whole life, dad has been more like a big brother to me; we both share the same interests and thoughts. I'm so stricken with grief about not having been able to speak and sharing a final hug before he was sedated, as I wasn't aware of him being taken in at the time; my mom called me just after. Nor was he aware he was so ill, according to my mom, so that's a very small consolation. Nobody anticipated this. I'm only aware of the ARDS disease since yesterday.

According to the doctor in charge, who seems to be well versed in ARDS, they're not giving up yet, but we'll have to be realistic that he's probably not going to make it: if the inflammation continues as it is and fibrosis sets in, the lung tissue will become so scarred the lungs will fail to work altogether. Yet from what I read on ards.org, if you make it this far, eventually the lung will recover, although it will take time. Is that a glimmer of hope for my poor old dad or am I deluding myself? Can that horrible inflammation eventually subside?

If only my mom and I could speak with my dad once more and tell him how much we love him and prepare for a proper farewell. Never in our wildest nightmares could we have suspected it would end so abruptly. We've prayed so many times to all sources of consolation we can think of, yet so far our prayers haven't been answered. The world has never felt so cruel and cold.

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I got severe ARDS about 2-3 weeks into an 8 week coma. I had flu, double pneumonia, sepsis, multiple organ failure. Went onto full life support, intubated, dialysis, started to pull through all infections to get ARDS. Fought this off eventually even though I was immune compromised and suffering from a common leukaemia- what I am trying to illustrate is that I wasn’t given a hope in hell of surviving. I have minimal damage to my left lung and a scar in my throat where trachy went in.

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Thank you Sepsur for your sharing your ordeal. That offers some hope. It's comforting to know that sometimes people who suffered even worse circumstances have managed to pull through. My chief worry is that the inflammation just doesn't seem to go away -- they still don't know the cause, despite repeated sputum and blood tests, so all they can do is ventilate and carpet-bomb with antibiotics. It's like trench warfare. How long did your inflammation last and how did it eventually cease?

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I don’t know to be honest, what I do know is that it was touch & go still after 80 days - nurses were scared of dealing with me. My sats. would plummet every time they tried to wean me of anything.

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Don’t give up. My dad was recently in ICU with 4 life threatening conditions. Several times the doctors said they were very worried about if he would make it. He has a heart condition and type 2 diabetes too. After 2 weeks in a coma and another 2 weeks in hospital today he comes home. So never ever give up. Sending you positive thoughts & much love.

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I was also in icu with sepsis, ards, mrsa pneumonia, heart and respiratory failure along with kidney failure and a whole alot more.. I am 48 and I eventually came out of it and still recovering, bit I'm alive.. don't give up hope

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Hi there,

Just to let you know,your situation sounds identical to what happened to my dad last April. He too was 73. Suddenly developed pneumonia in both lungs. Taken to intensive care, sedated and intubated. His prognosis was not good. He also suffered a problem with his bowel whilst this was going on which he had to have surgery on. I felt exactly as you do. However, he survived. It was a long time in intensive care and then rehab but almost a year on, he is doing really well and making an excellent recovery, going to gym and back out on the golf course!

The only thing I would mention which you have not mentioned is ecmo. Has your dad been put on this machine? My dad was and I believe this helped to save him as it allows the lungs to rest. They told us view wouldn't usually try it on people his age but as he was fit and healthy prior to the pneumonia it was worth a try.

I wish you all the best and really hope your dad pulls through.

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Thanks for your story and encouragement. I've asked about ECMO this afternoon when we visited the hospital, but due to the weekend shift, the usual doctor in charge was not on site, just the assistant doctor and the nurses. To be discussed the next morning.

Then two hours ago, I got a phone call that the sats were dropping dangerously low and that he's on 100% O2 now. They asked if it's OK to try turning him in the prone position, because that might sometimes help. Well, yes! They were still checking with another hospital equipped with ECMO if it was available, but apparently not. An hour later, another call that the prone position has improved the sats considerably and that they'll call me first thing in the morning to discuss the next steps.

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Gosh, sounds like you are having a very tough time. Glad the prone position helped.

Yes I think ecmo is only at certain hospitals. My dad was moved to a different hospital. And they only have a certain number of machines. Fingers crossed for you.

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Prone position has indeed helped somewhat, no complications, but no lung improvements either. It's so frustrating! At least it bought us some time. After considerable deliberation, they didn't want to go for ECMO yet due to the considerable risks involved and because the machines available in the hospitals that are equipped with them are generally intended for relatively short durations, a few days at most. Upon my suggestion they had also investigated whether the brand new experimental drug Traumakine is an option, which might treat ARDS but is still in its last clinical trial. But it's not sure whether it would have the intended effect in this case and it would be very hard to get anyway. At least they have seriously considered those options, for which I'm grateful.

One thing still puzzles me though: according to the doc, the scar tissue that develops in the lungs never gets better, so any damage would be permanent. But other sources and some stories here indicate that eventually lung function improves again, although it might take a year or so. Which leaves me wondering: assuming you can sustain the oxygen saturation and prevent complications, can you "ride out the storm" and eventually pull through, or will it get worse and worse?

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I know with my dad, it seemed a very long time with little or no progress. It's very hard as you just feel so anxious the whole time. Re ECMO, yes it is not without risks. You have to trust that the doctors make the right decisions. We were told that the sooner he went on to ECMO, the better the chance of it helping and that it would improve his survival chance from about 30 per cent to 60 per cent. They also said that most people would only be on ECMO for a few days but that they'd try dad for up to around 3 weeks if required (think he was on it a little over 2 weeks in the end).

Not sure about fibrosis. I recall talking to a doctor one day and being told that the fibrosis had progressed so they needed to administer a high dose of steroids which itself brings further risks. But before they could do that, they needed to be sure that a cmv infection dad had also developed, had gone.. so we awaited test results for a few days. By the time the results came back they had done another scan and decided he no longer needed the high dose steroids as he was getting better by himself, in other words, the fibrosis was not progressing. I have always been confused about fibrosis as we'd been led to believe that it could not be reversed and lung capacity would be compromised going forward, but dad has had a few scans since coming home and they show a big improvement and yes, he can still get a little breathless, but he is able to most things he wants to now.

Really hope that things start to improve soon and you get some positive news.

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There has unfortunately been no positive evolution so far, despite a false start halfway through. It's been 28 days now and Dad is stable but not improving; there still is fluid in the lungs. That inflammation just doesn't end...

Yesterday they performed a CT scan, hoping to find new insights. Today the doctors reported that there really has been no improvement, and that the fluid in the lungs is directly leading to scarring. He's now getting a last-ditch massive cortisone treatment, despite the risks, in an attempt to finally curb the inflammation. They'll keep going for a few days but the question has been raised on whether he would want to continue getting treatment. My mom and I cannot bear the thought of effectively condemning him to death...

All of this situation is so cruel, so inhumane, that we just don't know how to cope with it anymore. All my remaining hope throughout this ordeal was that he would eventually become one of the exceptions, like you, snatching victory from the jaws of defeat, but all my hopes have now fled. It seems luck has finally run out and nothing in the world can save him.

What are we to do?

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Please don’t give up. My mother was admitted a month before your father for bad double pneumonia from swine flu and strep bacteria, sepsis and was in icu for 2 months. The pneumonia then became severe ards. For a lot of it, it was touch and go and it was absolutely heart breaking to go through this. My mum is now in general ward. She is no longer on the ventilator but on oxygen therapy. She has a long and rocky journey ahead as she needs to relearn how to do everything as she has lost substantial muscle mass. Every day is a struggle but she is fighting and will try her best. I just wanted you to know that there is hope. Hang on to it , don’t give up or let the doctors give up. Stay strong, optimistic and I wish your dad a quick full recovery.

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Thank you Amberferry, for your heartwarming and comforting encouragement! We often feel so helpless but your words keep our spirits up. We hope from the bottom of our heart that your mum will fully recover and wish you both the best of luck together.

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Unfortunately, after over five weeks Dad has ultimately lost the battle. Despite the very best efforts of the team and all our hopes and prayers, the condition had suddenly deteriorated rapidly. Rampant fibrosis stiffened up the lungs so much that they just couldn't work properly anymore.

A great man has left this world all too soon. I'll miss you immensely Dad. You'll be fondly remembered as a proud father, a loving husband and a good friend to many.

Let us all hope humanity eventually finds a cure for this horrible disease, for no one should have to suffer such an ordeal.

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😢 I’m terribly sorry and sad to hear of your father’s passing. He was on my mind and I was really hoping he would recover. This disease is absolutely terrible and one that needs more awareness and research to improve treatments and ultimately recovery chances. Though my mum is out of icu, this disease has taken a lot out of her. Her daily struggles are real and some possibly permanent.

My heart goes out to you and your family. And I sincerely wish you strength, peace and focus when you need them to get you through the difficult days.

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I have just caught up on your story. I am so sorry that your dad did not make it. I was so hopeful he would. I hope you are all okay and managing what must be a very sad and hard time.

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