ARDS Survivor

[LynnFL1125]

I am recovering from pneumonia, H1N1 flu and ARDS. I was on a ventilator in ICU for 2 weeks. I would like to chat with other survivors regarding recovery.

[Luckyone]

Hi JeriLynn,

I had double pneumonia, severe sepsis, MOF & ARDS five & half years ago, intubated for 19days and a tracheotomy for a further 62 days, with 88 days in ICU and 15days on a general ward and left hospital almost 4st lighter, a lung capacity of 54% and post ARDS pulmonary fibrosis leaving my lung looking like a patchwork quilt.

I had to learn to walk again as I'd lost so much muscle and at times when it felt I would never improve I wished I had never survived, these became my darkest days but I was determined to avoid antidepressants which unfortunately meant my wife and family took most of the flak, thankfully they saw through my frustration and gave me great support until I got the psychological help I needed, but a conversation with the follow up nurse was my real turning point in recovery, she ask me to speak to a ICU patient suffering badly to reassure him things do get better, I visited him on several occasions but unfortunately he became very ill again and passed away, which makes you realise how incredibly lucky you are to still be here.

After about 6 months I started walking my dog a little further each day at a must slower pace than he was used to but when I went for my !st year checkup my lung capacity had increased to 86% where it has now leveled out and a blood oxygen level of 93% with fair poor gas transfer due to the scarring. It's just a case of knowing the limits of what you can do, for me it's avoiding hills as much as possible but apart from that life is fairly normal, everyone is different and I'm told mine was a very extreme case and I was lucky to survive. Ive put my experience to good use by becoming involved with ICUsteps helping people understand the difficulties suffered by many ICU patients both physical & psychological, along with educating healthcare professionals to hopefully improve lives of future patients.

Bill

[LynnFL1125 in reply to Luckyone]

Thanks for replying, Bill. See my response under Sissy13's comments.

[Sissy13]

Hi there, I was in hospital 2 years ago with pneumonia, sepsis and ARDS, I was put on ECMO (extracorporeal membrane oxygenation) for 17 days, was in ICU on a vent for a month!! I also had kidney failure and had a month on dialysis.

Like many ARDS survivors I had to learn to walk again and build up strength and muscle thatI'd lost during my hospitalisation.

Ask away with any questions you have!

[LynnFL1125 in reply to Sissy13]

Thanks for your reply and for sharing your story. I thought my experience was bad enough. Yours was even worse. I experienced nightmares during the time I was probably on the vent. I dreamed I was restrained and no one would help me. The dreams had different settings but I was always restrained. The people I dreamed about were comforting me but I didn't trust them because their faces were distorted. I am now having emotional spells where the least little thing makes me start sobbing. I have also noticed my hair is falling out. I hear this is pretty normal. I am glad to see I'm not alone. Just wondering how long this will last.

[Sissy13 in reply to LynnFL1125]

I had no dreams that I remember but I know of others that did.

With regards to the emotional spells.....It's common too, for people to suffer from post traumatic stress disorder, being seriously ill in ICU is, after all , an extremely traumatic event!!! I still get them after 2 years. People think that when you come out of hospital after an event like this that you should be happy to be alive and everything is finished there!!! Unfortunately try telling our brains that!!! It isn't that simple! ! I would have thought like that, if I didn't know better!

Recovery is long, both the physical and mental recovery. I was lucky , I have no real physical effects, I can do what I did before( I love hiking and skiing) But during my recovery at home I ate, slept and took little walks everyday with my dogs, making them longer gradually.

The hair loss will stop after a couple of months and grow back, although I still have a bald patch at the back of my head where I had a bed sore!

It's a long and windy road, eat well, sleep lots and get a bit of exercise! Many benefit from therapy or counselling for the PTSD . Sending hugs! You've been to he'll and back and survived against the odds!

[ShakyPancake]

Hey JeriLynn -

Ironically, I just replied to a post you had put on my thread about hair loss. Hope you get some info from that.

My case was similar to yours - double pneumonia and H1N1. I went into accute respiratory failure 2 days into treatment, was rushed to ICU and was on a vent for 5 days. I'm quick to count my blessings that what I went through is minor compared to others.

I'm a relative newbie at this . This week marks 4 months off the vent for me. I consider myself lucky when it comes to my recovery - physically. I have surprised a lot of people at how quickly I have gotten back to normal life - work, day to day activity, I have even travelled (albeit I may have been over eager on that).

That said, that pretty picture is most definitely "for show" for the people I see daily. Those closest to me know that I'm still going through a lot of recovery. I have PTSD counseling twice a month. In the last 2 months, I've been suffering from spells of depression and loneliness. Like you, the smallest things just seem to make me cry. My lung function is still deminished (to a degree) - I know they will take a long time to recover but I do notice they aren't what they used to be. Like Bill, I avoid hills, steep stairs and now high altitudes. The hair loss kicked in about 4 weeks ago. I'm praying for that one to slow down any day now.

I have been fortunate not to suffer from nightmares - during or post my sedation. However, recently I've had sporadic moments where something will trigger a vivid ICU memory. It's powerful enough to derail my train of thought and almost feels like I'm being transported back to that room and the sites, smells and sounds that I remember from my experience.

Hope this helps. I know I've found this page to be a new haven for me. Everyone is very welcoming and great with advice.

[sy_n]

hi there, i had ARDS and sepsis and was in a drug-induced coma for 2 weeks, intubated for almost 3 weeks - it's been 4 months since i was admitted to ICU. i had the tube in for 2.5 weeks, was discharged at 3 weeks from admission. i am lucky to have had such a "short" stint, i'm told.

i had hair loss at 1 month and am now going through another bout of hair loss, it just started again this week. my hair was growing back, i have lots of short hairs in my part that i can see, but now i'm losing lots of the bulk again... i understand this goes on for around 6 months or so?

my biggest issue is joint pain - i am certain it is a side-effect of being on levofloxacin for a month. i feel like an 88 year old in the mornings, and even during the day -- my joints/limbs will loosen up as i wake up and move about, but after sitting or not moving for awhile my joints will stiffen up again, just as it was in the morning.

this is not improving, it remains about the same each day. i still have to take naps most days, fatigue hits me and i can't keep my eyes open so i have to take an hour or so nap... sometimes twice in a day.

other than that, i am able to walk with my ladies lunch group - but of course, i am wiped out afterward. my lungs have expanded, but i had to take a breathing test and have an appt to see a pulmonologist this month, as there were some foggy spots still on my lung. it might be scarring, or it might resolve, i just hope it isn't anything more serious...

i am hoping with time my joint stiffness/pain will resolve or at least decrease... i realize it isn't much to complain about, in the scheme of things. i am continually grateful that at least i am here and able to 'complain'...

; )

[LynnFL1125]

It's reassuring to read all of these replies. Hey, I'm not crazy! Yea! I am so glad I found this website and group. Thanks, everyone!

[BBDEBS]

Hey Jerilynn!! My fellow swine flu pneumonia survivor!!!

Welcome!!

So, how long ago were you in hospital? I was discharged end of March this year and can tell you I'm slowly, very slowly returning to work, I'm driving accompanied, I'm an emotional wreck and I shaved my hair off!! It was pretty much gone anyway but it's growing back now and I'm rocking the pixie look.

Have you checked ICU steps website for a local support group?

I'm keeping a blog charting my sisters diary of my recovery and my thoughts and ramblings too. My sentence structure improves with time so please bear with me!!

copy and paste into your browser if you can xx

comarecoveryblog.wordpress.com

All the very best and welcome!!

D xxx

[LynnFL1125 in reply to BBDEBS]

I started getting sick on March 5 of this year. After 3 trips to the doctor in one week, I ended up in the ER. Within 24 hours I was on a ventilator. I came off the vent on March 26. Went to a rehab hospital on April 1. Stayed there for 8 days. I have had fibromyalgia for 26 years so that only complicates matters. I am so glad I found this website. I can write any time of day or night and get a quick response from someone. I live in Jacksonville, Florida. I didn't realize this website is based in the UK but that's ok with me. It popped up first and looked the most organized. Plus...I love the UK, the people, history and your accents!

[celioguim]

Hello everyone! I'm glad I found this website, I'm also a ARDS survivor, fought really hard after days of being in coma, all kinds of complications, ventilator, ECMO and everything. Everything happened in March 2017, but I'm still fighting my thoughts. Smells, thoughts, movie scenes, lot's of things put me right back inside of that ICU at Shock Trauma in Baltimore. I can't watch movies scenes where people suffocate, that a big no no to me. One thing that helps me is that every time that I look in the mirror and I see the scar on my lower neck where one of the tube when in, I really thank God for allowing me to survive.

[Nicholsshelbie]

Hey, my mama had the flu and developed ARDS and sepsis. She been in the ICU since Christmas December 25. She been on the ventilator since. Last Friday she got stable enough to do the Trachea. She was doing good, until yesterday morning her blood pressure dropped and her kidneys are shutting down. All her vitals signs are good now, but she not peeing. They said they would have to wait and see if she can get a good blood pressure before they do dialysis. Please help me as I'm so worried about her. She turned 39 today. We believe she fighting.