My Dad is fighting ARDS

[Nabess]

My Daddy had Influenza A/H1N1, bilateral pnemonia which has led to ARDS.  He is in ICU and the doctors and nurses warn us that he is in trouble.  I'm looking to hear from people that have been intubated for long periods of time and have fibrosis from the ARDS and infection.  We are trying so hard to stay encouraged and hopeful. 

[BBDEBS]

Hi there, I was intubated for 3 weeks ending 5 weeks ago from viral and bacterial pneumonia coupled with swine flu. It sucks and he will try to fight the tube when they bring him around but this is wholly normal. Be aware he will be very emotional and not know what's going on. As far as he will be concerned, it's the same day he came into hospital or the last date he can remember as in my case. The nightmares are awful so I recommend counselling. Please keep a diary of his progress, warts and all, my sister did this for me and it has really helped sink in that it was me this happened to xx all the best xx

Debs xx 

[LynnFL1125 in reply to BBDEBS]

Wow! Your experience was exactly like mine! It's reassuring to read your comments as well as other. Thanks for sharing!

[BBDEBS in reply to LynnFL1125]

I know right???? Hey there!! Xx

[Luckyone]

Hi Nabess,

I had double pneumonia, severe sepsis, &MOF which like your dad led to ARDS, just over 5 years ago, my wife and family told I was so critical I shouldn't have made it to hospital and had a DNR placed on me on day 3, which thankfully was removed the next day as in the word of the consultant a "miracle" had happened during the night.

I was intubated for 19days before I could have a tracheotomy as I was to ill before that, I had the tracheotomy for a farther 64 days, on dialysis for 6 weeks as the sepsis had caused so much damage and ARDS made my left lung & 2/3 of my right lung completely stiff, the consultant told my wife as long as they had some lung to work with they would not give up, I spent 88 days in ICU, with the first seven & half weeks completely missing which for me where just full of nightmares & hallucinations, thankfully my wife kept a diary of that missing time, that was very difficult for her and the family not knowing if I would come through it.

I finally left hospital after 103 days, with a 54% lung capacity and post ARDS pulmonary fibrosis, looking much older than my 52yrs, I suffered greatly for the first few months after leaving hospital trying to come to terms with what had happened, I had never smoked and yet my lungs had suffered massive damage due to ARDS, meaning I was unable to return to work.

Fortunately I managed to get the psychological help I needed and with gentle daily exercise I managed to get my lung capacity up to 86%, unfortunately due to the scarring from ARDS my gas transfer is greatly reduced but you learn to live with it taking thing at a much slower pace. I've used my experience by becoming involved with ICUsteps and helping others understand what they have been through and that they are not alone in the often long journey to recovery.

I know you're going through a very difficult time and must wonder at times if your dad will pull through, don't give up hope, keep talking to him with words of encouragement and remember to look after your own health as he will need your support in his recovery.

Bill    

[Phil112]

Hello Nabess. Don't know how old your Daddy is but I  am 64 and as Bill says he may take time to recover but it's strange in fact how we do. I had no strength at all and managed and now here talking to you as Bill did to me. My wife recently wrote her account of what happened to her during my four and a half weeks in induced coma with Critical Sepsis and I found it really helpful to me when I read it recently. I think as others have said it is good to keep a day to day diary, record, journal call it what you like but if he is anything like me he will want to know lots of things and gaps filled in. Also try to do one for yourself and how you feel and what you do from day to day your visits, your day to day routines etc. From experience I think this is of immense help to both of you when the time comes to start chatting and talking it all through with each other.

I hope my little bit of advice is of help to you

Phil 

[dall05]

Hi Nabess,

5 1/2 years ago I entered ICU with a double pneumonia and things were looking pretty bleak for my survival. The pneumonia turned to ARDS which resulted in my family being told that I probably wouldn't survive. After a month of sedation and ventilation I pulled through by the skin of my teeth having survived multi organ failure and owe a lot to a machine called the Nova Lung.

It was a further 3 months before I left the hospital and was able to walk/shuffle again.

A couple of months later while at home the consultant from ICU who battled to save my life phoned and told me he had nominated me to carry the Olympic torch because of how I had fought and beat the odds. At this point I realised how lucky I had been as even he who had dealt with so many sick patients remembered me as the one who stood out. I didn't get to carry the torch but it meant a lot to be just nominated.

Of course it didn't end there as the damage that the ARDS caused left me with Pulmonary Fibrosis so now I am battling with that. My lung gas transfer is 23% and I'm on the transplant list at the Birmingham QE.

They have also made a diagnosis of an auto immune disorder called Anti JO-1 POSITIVE which they say is attacking my lungs causing the fibrosois to progress.

If I can be of any help what so ever I'll do my best to answer any of your questions and worries.

Tony

[Nabess]

Thank you all so much for sharing your stories.  My Dad is 67 and never had any lung problems prior to this.  We are on day 15, and the oxygen is back at 100%.  Last evening, the tube was starting to come out.  They have him incredibly sedated and I'm assuming paralyzed.  One of the nurses came to talk to us, and in front of him (although I know he is asleep, I know he can hear us) said that if it was in her family, they wouldn't want this.  I was quite angered by that, and told her of your stories.  I know they're not common stories, but they do happen.  People do heal.  Miracles take place.  His organs are functioning other than his lungs and he still has an infection someplace.  I'm hoping the xrays are seeing infection rather than fibrosis.  He is on Vanco, Cipro and they've added a third as of yesterday.  

The hardest part for me is worrying if he is in pain or suffering.  If he is scared.  That just devastates me. 

[Nabess in reply to Nabess]

I should mention they have him on Dilaudid, Ketamine, Versed, antibiotics, antifungal, prednisone, and probably more that i am forgetting.  His BP is good, his sat is always between 90 and 95.  His PEEP has been changing between 12.5 and 15, although they've been trying a form of recruitment breathing which looks awfully uncomfortable.  He is still too fragile for prone bed, CAT scan, or ecmo.  Has anyone had the nitrogen therapy?  The doctor mentioned that once.  

[JPNF in reply to Nabess]

My husband 52 and is in ICU at the moment. He caught influenza, which turned into double pneumonia. He ended up in Sepsis shock with multi organ failure and then severe ARDS. We have been told twice that he wouldn't survive, it has been absolutely horrific. Wythenshaw hospital were contacted regarding my husband going to have ecmo but they wouldn't take him until the the doctors had tried phoning him. He was proned 3 times in the end. The first time was horrible because he looked in so much discomfort, but the next 2 times weren't as bad. It definatley helped. He was incubated for 5 1/2 weeks, and had a tracheotomy last wednesday, which was a massive step forward. He has had his sedation reduced since then and is still waking up. Don't give up hope, I almost did at times, but everyone just kept me going. My husband still has a long long way to go, and is still have some setbacks and complications, but he is still here, and so is your dad. The ICU staff are amazing and will do everything they possibly can for him.

[dall05 in reply to Nabess]

Hopefully I can help here as I certainly wasn't in any pain when sedated and could hear nothing that was being said around me. However some of my dreams which were pretty amazing and lifelike could be linked in some way to things that were being said to me by my wife while I was under sedation. It seems some of my dreams may have been triggered by things that were being said around me so the nurse does need to be more sensitive to this just in case.

Also the noises that all the life support machines were making around me seem to act as triggers for certain dreams. I gradually pieced this together when out of sedation.

ICU dream world was a good place for me as most of my dreams were actually quite a lot of fun so try not to worry. Dad could be having quite a good time like I did which does sound a little crazy under the circumstances, all I can tell you is of my own experiences.

Try to stay positive.  Tony

[Nabess in reply to dall05]

Thank you, Tony! My sister just visited Dad at the hospital and found that they had turned him to the prone position.  We are shocked, but hopeful as they are doing this to see if he will be able to be moved and benefit from being sent to a major university hospital where they have more resources.  We have to wait until tomorrow morning to find out.  We will continue praying and hopefully things go well.  

[dall05 in reply to Nabess]

I'm crossing everything for you all Nabess

[Sissy13]

I was taken to hospital in June 2014 with my oxygen sats at 68 and hypothermic,  I was put in ICU , diagnosed with pneumonia,  sepsis and severe ARDS,  the next day my condition was deteriorating rapidly and I was referred to a regional ECMO center.

A team came and put me on ECMO then I was transferred to the ECMO specialist hospital.  During ECMO I had lots of complications,  the ECMO malfunctioning,  a misplaced catheter,  heart problems,  enlarged liver, lung haemorrhage,  pelvichaemorrhages, kidney failure. 

I was also given dialysis whilst on ECMO. 

I was on ECMO for 17 days,  in ICU for a month and then a further few weeks after on a ward.

 See if ECMO (extracorporeal membrane oxygenation,  basically the blood is oxygenated outside of the body giving the lungs a chance to rest and heal.

Sending huge hugs to you and your family in his difficult time. 

There's hope!!!! Don't give up!

[Nabess]

Thank you all so much!  I am amazed by your stories and by just how much you've all been through.  You are all so strong!

They were able to move my Dad to a large hospital with the tools to better treat him and get him well.  He is still heavily sedated and paralyzed with the drugs, but he is in a good place to let the healing and recovery happen.

It is a 2.5 hour drive from where we live, but that is alright. My family is going tomorrow as we all have to work and my Mom just got a UTI and she has lowered kidney function, so we need to take care of that as well.   

All in all, we are hopeful and love eachother very much.  I am so grateful for our blessings from above and for the wonderful stories you all have shared.  Thank you!

[Sarahdulsonmart]

How is your Daddy doing? I had pnemonia, sepsis & organ failure 6 weeks ago! Thinking of you Xx

[Sarahdulsonmart]

Sorry forgot to mention, I never felt pain, scared or anything else when under apparently my Mum said i looked very peaceful & that's all I remember now x

[Nabess]

My Dad isn't doing well. He has an infection someplace that vancomycin and cipro aren't getting rid of. When they moved him they put him on fentanyl and I had to tell them that it was the hydromorph that worked better. He is too weak for ct.  They think he has a bleed somewhere but there is no blood in any of the things they are able to test. I am still hanging on to whatever hope we have left. We miss him so much. 

[Sarahdulsonmart]

This makes me so sad for you all, I am thinking of you, if it helps when I was on life support with pnemonia, sepsis & organ failure, I don't remember a thing & certainly felt no pain, I hope this is of some comfort, Keep us posted Xx

[Nabess]

Thank you for your responses. 

We are at the Calgary hospital with my Dad at the ICU. After two weeks of not being stable  enough, yesterday, conditions were perfect to get him into CT for a scan. The scan showed them that they need to really get the fluid off. They've put him on continuous renal therapy although his kidneys are fine at this point.  

The infection appears to be on the mend but the virus is still active. We are still hopeful. We are on day 21 of the intubation and aren't sure of anything, but just taking it hour by hour and continuing to pray.  

[LisaJanex44]

I had peritonitis which lead to Ards last year, you poor thing I know how tough it was in my family!!!

Just know that when he comes round the hallucinations etc he has had isn't him, it's the infection/medication and he will be confused xxx

Remember to keep talking to him, no matter what they say!!..I could hear my mum sometimes talking to me and stroking my face x

When the time comes he wil feel ready to talk about it and make sure you can both talk it out!!! It goes both ways patient and relatives (sometimes I think it's worse for the relatives!) but be patient and understanding because he won't know what has happened while Hees been 'away'

Have you in my thoughts xxxx

L xx

[LisaJanex44]

And just so you know, the dreams can be frightening for some people but everyone I've spoke to all seemed to talk about feeling very calm xxx I was the same even the stuff now I think about it shldve been scary but for some reason it was tranquil xxx Hope this helps put your mind at ease a bit xxx

[Nabess]

Thank you so much!  The dialysis machine had a malfunction today and my Dad lost blood so he's received a transfusion.  They got it back working properly so they will continue to take the fluid off.  In the prone position, his oxygen requirement was only 60%, down from 90% a couple of days ago.  Laying on his back, it's higher but he's had a pretty hard day so far so I suspect it will go down once they stop agitating him with movement.  They've also done a bronchioscope. This weekend we had a couple of good days, and today's been a little rougher, but we are praying for a few more good days coming up.

[Nabess]

Today, the vitals are maintaining and they continue to pull fluid off.  They started feeding a couple of days ago and now he is also doing well with the feeding tube and getting some nutrition. It's day 23 and we are so hopeful.  He'd never believe he's been asleep for this long or had such a tough fight.  I can't wait to tell him how amazing he has been.  

[Nabess]

Three days ago the doctors took my Dad off of the sedatives, paralytics and painkillers. They wanted to see what he could do on his own. They called us in today as he has developed a fungal blood infection making him septic and needed to know what we wanted to do. His heart and liver are ok. Digestion and kidneys are tough. His lungs are very stiff and aren't passing the gases the way they should. 

We told him to go for it, to change out his lines and keep him sedated and wait for the sepsis to go. We can't give up when he hasn't. 

I can't believe how hard this has been. God bless each one of you and your families for surviving and supporting each other. You are all miracles. 

[Nabess]

My Dad lost his fight today. He fought a good battle and was brave and he was so very loved through it all. His body just couldn't take it anymore. He was a good man with a kind heart and we are going to miss him so much.  Thank you to everyone for sharing your life stories with me. I wish you all good health and continued healing. You are all in my prayers. ❤️

[dall05]

I am so sorry to hear this Nabess, my thoughts are with you all at this very sad time.

[Greenseyesicu]

Hello i was admitted to hospital in February this year bad cough violently ill. Thank the gods my husband took control and rung a ambulance. 4.30am ish l was admitted then put into a induce coma. I not only had pneumonia l had staph as well. I was in the ICU all up 31 days. I had a tracky put in and my family were told to expect the worse as l wasn't  responding to antibiotics or medical treatment ect. They gave me between 48 too 7 hours 2 to live. My extended family lives over a hour away they all came. My husband and our daughter were there everyday in the ICU. My son would visit on and off too.I'm 46 in September. I also had a broken left rib. No explanations were given for this.

Don't give up l didn't give up your dad would be fighting hard l can assure you. I was induced for over 18 days. It's now April l spent nearly two months in hospital. 

Get down low talk gently into his ears HE will hear you. I heard my husband and daughter during my coma l remember what they said and apparently l open one eye and they race to re-sedate me. I made it clear before l was induced to the doctors "l have a message for my family, l love them very much, my will is strong, don't give up on me".

I am home now very tired my muscles hurt like the dickens but l made it l have scars all over my neck and throat my wrists and where pick line came out. I ended up with a clot once it was removed but it dissolved back into my body. 

My advice listen to all medical advice given to you at the time and believe your love one is fighting even in the coma. I hope your father will be okay l really do.

[Greenseyesicu]

I'm so sorry l just read the above. My love to you and your family! X

[BBDEBS]

I'm so very very sorry to read your update. I was just about to post how my husband had been told I should not be alive and wouldn't last the night but read that your poor daddy had lost his fight. For what it's worth, he will know you were with him and he would have been very peaceful xx God bless to you and your family xx