Moving forward

[Luckyone]

The end of January 2015 is fast approaching with a lack of posts this year, as monitor of the community for ICUsteps I thought I post a few words to get things started again.

I've been asked to talk at a conference in April regarding the recovery and support I received when I left ICU, it was while I was putting my PowerPoint presentation together, looking back over the last 4 years I realized what little support was available then.

Leaving ICU after 3 months for a ward was a total nightmare, with no understanding of the trauma I had been through, even being asked by a doctor who never checked my notes, "Have you had a stoke" totally unaware I had had double pneumonia, severe sepsis, MOF & ARDS, I was so glad to leave the ward after 2 weeks and finally go home after 108 days.

I was so pleased to finally be home but totally unaware how difficult things would become, it felt like when you left hospital you were given a discharge letter and forgotten about, the only help I received was some community rehab, where someone would come and help me with walking again as I'd lost so much muscle tone. I quickly slipped into a depressive state due to the lack of support, it wasn't until my niece who is an ICU nurse helped us get a follow-up appointment with the ICU consultant that things started to get better, he arranged psychological help for both my wife and myself, we had to wait another 4 months for the appointment, which for me was to late, as I had started to come to terms with what had happened.

I've been very fortunate since those early dark days, putting my experience of being a patient in ICU to good use by starting a local support group back in early 2012 with the help of my wife, niece and another nurse, which became part of ICUsteps in late 2012, I had the good fortune of becoming a trustee of ICUsteps in 2013 and spoke at their first ever conference in November 2013, along with talks at my local hospital, talking of my ICU experience.

It's been my way of giving something back, turning a negative into a positive, hoping it will inspire others to become involved in this very special charity.

Best wishes to all on your journey to recovery, wherever it may take you.

Bill

[valruss]

Hi Bill - My husband was in ICU after encountering massive problems following radical surgery. He was ventilated and cared for in ICU for three weeks before being sent to a ward where his symptoms of anxiety, confusion etc were not addressed and like your experience, the staff were unaware of him having MOF, pneumonia, sepsis etc. After coming home 16 weeks later, he continued to be extremely anxious and fretted over anything and everything. His life seemed dominated by "time" and he was very demanding about his routine and any deviation caused him so much stress which made life for the family very difficult. All this behaviour was totally alien to him as he had always been a laid back, happy fellow. Our GP was a great help but even he did not understand the difficulties of transition when patients leave ICU for the ward. It was a great relief to my husband and the family when we were introduced to ICU Steps and were able to attend regular meetings and meet other people experiencing the same experiences. The ICU consultants and nurses who looked after my husband usually attend the meetings and were able to explain exactly what my husband's treatment had been and he was invited back to the unit to see where he had been treated which helped him tremendously. We also kept a diary for him throughout his journey which he often read when he was at home. Unfortunately his illness was untreatable and he passed away last September but my daughter and I have continued to attend ICU Steps where we have made many friends but more importantly, have been able to help people who had been through similar events in ICU both from a patient and a carers point of view. Please keep up your good work and let's hope that in the future there will be more resources available to help patients who have gone through such a traumatic process. Val

[Offcut]

I was the same 32 days in ICU with Empeyma, pneumonia, MOF, 10 days on an Oscillator with a loss of 3.5 stone of mainly muscle. When they put me in the general ward it was like I was starting big school again and I was frightened but had one of the ICU nurses come and see me in his own time which helped me no end.

I cheated the O2 level test they gave me to get out! When I got home and in the house I realised I had to go up stairs? Luckily I have a 6 foot 2" strong son that supported me up the stairs. Which seemed to take forever. I went to the loo and passed blood so my wife called a GP out. He read the Hospital letter and said to keep an eye on it. and that was it no follow up.

The only follow up I had with the specialist 1 week later who was the nicest person I had the pleasure to meet. When he called my name and saw I was in a wheelchair and the wife was struggling he came and moved me into the office himself. His first words were "You do not know how lucky you are do you?" To be honest I did not. I know I was not well at all. They moved me to a specialist hospital for a decortication but could not remove the empeyma as they decided the operation would of probably killed me. So they put me on a Oscillator for 10 days which they said at best was a 50% survival chance. I was moved back to the original hospital were the infection and extra scarring from the Oscillator meant my lungs had a major bleed and I was given 6 units of blood that day. My wife was told a number of times that I was in MOF and not thought to survive the night! She only told me this week that they thought I had cancer as it was showing like asbestosis as my lungs had compartmentalised, but at the time I was under the impression that I was using a asbestos substitute which in fact was wrong and it was brown asbestos I was cutting on a circular saw for 10+ years.

I had quite a few visits to the specialist and when he discharged me after 2 years! He said it was so pleasing to see some one fight against the odds but was sorry to say that I will not improve any more and he is sure I will be back!

I was a minor celebrity in my main hospital and known as the "Chest drain man!" I had an incident were I was having my routine Warfain test and the nurse said I seen you somewhere before. I asked if it was in the wards/ICU She said out load your the "Chest drain man!" and called in some of the others this is the "chest drain man" They saw the man without the tubes wires and traci. She explained that they were called to take blood at all sorts of times and the path lab was run ragged for quick results.

My GP's have just told me I have to live with it! I have RLD, PH, AF I am losing lung function at 6% a year and have not slept well since the admittance. The ICU stay was in 2008 .

Be Well