Turning lemons into lemonade

[Luckyone]

As the 3 year anniversary of my admission to ICU comes round (18th December) I reflect on how it has changed my life, one minute I was looking forward to Christmas the next I was fighting for my life, rushed to hospital by ambulance with suspected swine flu, taken from A&E straight to ICU, so critically ill it was thought I wouldn't survive, my wife being told I had a less than 10% chance of survival.

I have no memory from that day until 6th February 2011, but my wife and family remember everyday of that living nightmare. I actually had double pneumonia, sepsis, multiple organ failure, later complicated with ARDS, respiratory arrest, 2 cardiac arrests with a chest drain and tracheotomy thrown in to complete the set. All I can remember are the vivid nightmares, believing I was dead, stuck in this bazaar virtual world with no escape, until I was offered a deal by the grim reaper to allow back into the real world, which must have been coming out of sedation seeing even more strange things, believing the nurses wanted to kill me and they were taking other patients away to dispose of them.

I spent 3 months in ICU, most of it connected to a ventilator unable to speak, my mouth so dry I thought they were torturing me and then sitting me in a chair for the first time, it felt like sitting on broken glass, I began to think I would never leave, but on 15th March I was sent to a ward which was an even bigger nightmare with no understanding of what I'd been through, my wife's father died suddenly and getting another infection made things even worse, I was so glad to finally leave on 30th March.

I thought being home would be great, I had no idea how difficult it would be coming to terms with what happened to me, becoming so depressed and feeling a burden on my family I wished I'd never survived, I was in constant pain, had no energy and struggled to walk as I had lost so much muscle, I just wanted it all to end.

It was at my first followup clinic 3 month later when things started to change when my ICU consultant started to get the help both my wife and myself needed by referring us to a psychologist, but as there's waiting list it took 4 months before we had an appointment, tragedy struck again when my wife's mother died in September another massive blow for the family.

It's when I went for a second followup that things really changed, the followup clinic nurse asked me if I would speak to an ICU patient who had been in ICU for 60 days and was feeling very down, I visited him on several occasions planning to share our experiences over a beer when he got home unfortunately he never made it. This made me realize how lucky I was. leading to me, with the help of my niece an ICU nurse, in setting up a local ICU patients and relatives support group, holding our first drop-in at a local pub in April 2012 with about 8 people turning up, since then we have grown joining ICUsteps in October 2012, with me doing presentation to hospital staff and a local conference, in September this year I had the great privilege of becoming a trustee of ICUsteps and the honour of being a patient speaker at the recent ICUsteps conference, I feel I've finally turned those lemons into lemonade, by helping others on their journey to recovery.

Best wishes to everyone on that road to recovery and remember you are not alone.

Bill

[Barbarajoy]

This is a heartwarming story and the staff that was at conference were advising and helping me and all the speakers and yourself was admirable I didn't no anyone except my fabulous ICU sisters at Coventry but I felt I was part of a huge family. My wish would actually be my longing wish to go onto the wards and talk to patients who have come from ICU. And give the the wonderful help I received Again many thanks for your story you should be very proud xxxx

[Offcut]

Well put.

I was in ICU for 32 days in 2008 and on an Oscillator for 10 days Which I found out has a 48% Mortality Rate. I to had 2 chest drains and tracheotomy. The first drain they put in they got 3.5 litres of fluid off and then an average of 1 litre after that. My wife was told twice that was not going to survive the night. I had to have 6 units of blood one day as my lungs were bleeding so much with the infection. I lost 3.5 stone and as you say it is mainly muscle which caused 3 vertebra collapse while driving just after I started back to work! these have now turned arthritic

My second life in my head was so vivid and I still have questions as to what they meant. I have been told last month I have Restrictive Lung Disease due to scarring with a 53% lung function.

I have a very different outlook to life now once I found out how lucky I am to even be typing this.

Be Well

[AndJan]

What an amazing story! We were at the Steps Conference and heard you talk,utterly wonderful re your survival both phsically and mentally.What an amazing human being,able to turn such disasters into such positives.Life is not easy post CCU,infact far more difficult,in CCU you have the support of high tec,and highly trained nurses (altho ,as you say,due to drugs,mostly "they " are trying to bump you off !) There was no support post CCUfor my husband and myself,we were left with no follow up apptsand no support from anyone,a nightmare.However,we are a strong family,with great friends who have helped us thro the worst year of our lives,our fear is for the unsupported,who helps them ?

Hence it is our mission to help to change this ,via a local Steps.May your progress continue,and thank you for all you have done.

[Luckyone]

Thank you to everyone for their kind messages of support, hopefully it can help inspire others from this great community to join us in building a totally nationwide support group network of ICUsteps, something I know has always been Peter & Mo's dream the co-founders of such a great charity that is so close to all our hearts.

Best wishes everyone

[Barbarajoy]

i think out of all these or most of stories is the wonderful care we receive in i.c.u. but the follow up on other wards is not so good mostly because of under staffing. i often wondered if it would be a possibility for all us ex patients and relatives to visit them when they have been put on wards. we couldnt talk medically to them but be there for us to help understand we have been through it to. put our volunteering into more activity and more patients and relatives no we would be around for them if they needed. love happy xmas and new year to everyone lots of love x

[Luckyone in reply to Barbarajoy]

We tried to do this in our local hospital, but sadly just came up against red tape. We were told we would have to become volunteers of the hospital trust and have 3 training sessions, and then they would consider our request, even though we run the local ICUsteps support group.

It's a shame as we know more than most how difficult transfer to the ward can be.