Withdrawal of treatment?

[KarenR72]

My mum has been in ICU for 7 weeks. Two weeks induced coman, 5 weeks ventilated with tracheostomy. She initially was been weaned off ventilation and managed up to 6-8 hours breating on her own for a couple of days, but has declined over the last three weeks. She also managed to sit in a chair for about 5 hours on one day and was trying to communicated and clearly had all her chairs at home. She even managed to let me know what her PIN number is for her pension! It was the day after that she began to deteriorate. She is now only doing 2 hours at a time. She has ARDS and cricial illness myopathy. She has no movement at all anywhere appart from her shoulders, upper arms and head. She has started to become distant when we go and visit and isn't really responding to conversation. I've been worried sick about her apparent deterioration and asked to see her consultant this weekend. He was on holiday so I spoke to the consultant available. She said that from her notes, she didn't think there was a particular cause for concern, that she wasn't deteriorating, but had stayed the same. Her infection markers are still down, she is no longer on as much sedation and she was just comming to the end of a strong course of steriods. When I visited on Monday she was lifting her head completely off her pillow which I had not seen her do before. However yesterday the consultant who is assigned to my mum told me that she is not recovering, and that staying static is actually a bad thing. He said that she is not able to sustain breathing for any longer than 2 hours because the nerves and muscles which should work her lungs are damaged. He has suggested the kindest thing would be to withdraw treatment. Does anyone have experience of this? Thanks, Karen x

[Kerrymolloy]

Would you let me know what happens with this, my dad is similar but no talk of withdrawal or anything yet but just seems really distant. He started with pneumonia and just can't get over it, now think its lung cancer. Was in coma for two weeks and was put on tracheostomy a week ago and being weaned but can't manage. Sounds really similar xx

[Luckyone in reply to Kerrymolloy]

I was ventilated for 19 day and had a tracheotomy for a further 63 days, apart from a DNR put on me after 3 days (removed the next day) there was never any talk of withdrawing treatment, my lungs took a pounding and left hospital with 54% lung capacity, nearly 4 stone lighter and left with post ARDS pulmonary fibrosis nearly 4 years on I'm still here enjoying a very different life than I had before and I'm so glad to have had that chance.

[KarenR72 in reply to Luckyone]

Thank you for sharing your story, it's inspirational x

[KarenR72 in reply to Luckyone]

Hi, can I just ask, did you have mucles weakness and nerve damage? My mums is so bad she cannot move. They say she will not recover because if this x

[Luckyone in reply to KarenR72]

Hi Karen,

I have no memory of being in ICU until day 53, with everybody telling me how critically ill I had been and given a less than 10% chance of survival I was not expected to come through it but somehow I did, I remember trying to move my legs but nothing happened I couldn't understand what was happening to me, I tried to speak but nothing came out as I had this tube attached to my throat being told I'd had a tracheotomy to help me breathe, trying to move my arms was also very difficult, my wife told me I looked like an old man not the fairly fit 52 year old I was before I went into ICU, I was later told you loose around 2% muscle everyday while under sedation.

When they got me out of bed for the first time and sat me in a chair it felt like sitting on broken glass, I'd lost so much weight my skin just hung off me like an over sized coat.

I finally left ICU after 88 days on my son's 24th birthday, sent to a ward that I couldn't wait to leave, it was that bad that I looked forward to my physio sessions every day, but by day 11 or 12 I developed numbness in both hands, by now I just wanted to leave so I kept it quiet, especially when 2 days later the physio told me if I could walk up and down a flight of stairs I could finally go home, I somehow forced myself to do it I was so desperate to leave, I left hospital on 30th March 2011 a total of103 days.

I still have problems with my hands even after 2 operations to release trapped nerves in my elbow joints and also suffer with problems with my lungs and legs mostly due to the severe sepsis and ARDS but this will never stop me enjoying my second chance of life.

I spoke of my experience at last year's ICUsteps conference in front of 200 people, which I'm pleased to say is available to watch at icusteps.org/home/conferenc..., the website is also full of helpful information for patients and relatives.

My thoughts are with you at this difficult time.

Bill

[KarenR72 in reply to Luckyone]

Hi Bill, thank you for your reply, its encouraging to hear how far you have come. My mum has been on ventilation for 46 days. The other day when she was quite aware of everything I asked her if she wanted to live and she mouthed 'Yes'. Since then they have started to provide her with more support again because they can't really go against her wishes. After one week of aggressive weaning she has done 24 hours breathing for herself with some pressure and oxygen from the ventilator. A week ago she could only do four hours so I thought she was doing very well, until I was told yesterday that they had to increase the pressure and oxygen again yesterday as she was struggling. She looked terrible again. The physio has had her sat on the edge of her bed for 2 minutes today in the hope that it will encourage her to fight on. I feel like its a race against time now as the longer she is ventilator dependent, the more likely it is she will get an infection. I'm shattered, stressed and feel like I am experiencing her potential death every single day. Will she live or won't she, will she live or wont she....whats she going to be like when I ring in the morning... etc. I feel guilty if I enjoy myself at all, and I feel guilty for thinking she might be better off dead, and I feel guilty for wanting her to live because I dont want to lose her. All I can do is carry on hoping. Take care, Karen x

[Luckyone in reply to KarenR72]

Hi Karen,

My wife and family went through what you are experiencing now, never a thought goes into how relatives cope during that very traumatic time, my wife used to describe walking into ICU is like walking into another world where nothing else existed, she will fully understand what you are going through and had many of the same thoughts, hoping I would pull through, leaving me in the evening thinking I was getting better only to be told the next day I had got worse and needed to be sedated again and on several occasions the hospital called her to come quickly to say goodbye, something know one wants to hear, you should never feel guilty for your thoughts we want whats best for our loved ones, have you anyone to help support you? It's important to find time for yourself at such a stressful time, relatives and friends can be a great support, my daughter who was 20 at the time would always pick up the positive things the doctors said to counter act my wife's negative thoughts which helped her through, don't forget you should never give up hope as your mum has a will to live, she has told you that.

Best wishes to both of you.

Bill

[KarenR72 in reply to Kerrymolloy]

Hi, she has been suddenly talking a lot more and has managed to do 16 hours weaning but is still on a higher pressure than they hoped, too high to wean properly. Today she has had new tube inserted through her nose which is a treatment where they monitor how much work the diaphragm is doing. It means they can give her the right amount if ventilation hopefully. The consultant still says he is doubtful she will leave hospital. I've noticed how interesting she has suddenly become now they are trying a treatment which is new to this hospital.