Can anyone recommend any links or pamphlets I can give my employer to help them understand how I may be recovering after being in icu and on a ventilator and ECMO gor 23 days.
They have been good in helping me settle back at work but I am feeling like a fraud when I say I'm still getting tired easily and weak. This is 14 months after leaving hospital.
Hi. First of all have alook at the websites of ICUSteps or ICUStepsChester they both have a range of documents that may be of assistance. Let me assure you, YOU ARE NOT A FRAUD, whilst everyone is different its not uncommon for the after effects of a stay in ICU to be with you for a long time. You don't say whether you have other lasting issues nor whether you are seeking help with your tiredness and weakness. There is help out there.
Thank you, I will look at the pointers you have given. I have been left with nerve damage caused by the ECMO cannulas, although this, and the muscle weakness are annoying and painful, I am grateful to still be alive when I so nearly died 3 times!
My family were called in twice because I wasn’t expected to make it. One of the nerves connected to vocal chords has been damaged when the trachy was put in and I still have swallowing issues. 15 months on I am still going to exercise classes on zoom with icustepschester these are based on individual need whilst I am getting stronger it’s only the beginning of the journey. I’m glad I am retired because going to work would be very difficult and in the end employers only make you feel guilty for not pulling your weight.whilst I’m grateful to be alive I am going to make the best of it. My new Valve should last another 10 years and I recon that over ½ million was spent on my care.
It may help them to read so,e of the support information for ICU patients. See Link belowreadingicusupport.co.uk/for...
I volunteer with ECMO family support group at Wythenshawe Hospital. Here is a link to the family support group website
Thank you so much for your suggestion, I will look closely at that.
hi
the following links might help. regards Pete
covidpatientsupport.lthtr.n...
Thanks, although I never had covid, I'm thinking the recovery would be very similar.
It’s the other way round people with covid suffer the after effects in much the same way as anyone in icu. COVID has got more publicity
Ahh, I see. I just assumed covid patients suffer more.
I have taken this off the intensive care support group FB group
Acas has a helpline for employers & employees : acas.org.uk/contact
The Sepsis Trust has also issued a useful leaflet : sepsistrust.org/get-support...
It has been 16 months for me and people have been very understanding. Perhaps you could have your doctor write a letter one your behalf explaining that recovery may take awhile before you can be able to feel better. Your whole system has experienced total trauma and total recovery sometimes is a long road. I personally do not believe I will get the zip back in my life but most people have been good and are just thankful I am still here. Take care
Thank you for your words, my employer has been good with giving me easier roles with little exertion ( I'm a primary school teaching Assistant) but I just feel they don't really understand how it feels. Some days I push myself because I feel they will be thinking I'm 'dragging it on' a bit and playing on my I'll health.Look after yourself.
Hopefully with school out for the summer you will be able to relax and heal more. A little bit each day. I try to make a list that I should be able to do some days are good and others not. I have though gained back weight lost in ICU and more. But, walking each day also helps with healing as well. Take care
I empathise with your dilemma regarding your employer. You and your physical body have undergone trauma this will mean the healing (tiredness being one of the symptoms) will take time. It sounds as though you can point them in direction of hospital information etc to help you. My concern is more to do with you moving forward and would offer that building up your strength mentally emotionally as well as physically is paramount. this will also mean strengthening your immune system of course. There is plenty of advice out there on post covid help. I am interested in practical and preventive health management have been for over 40 years. I have worked in workplace wellbeing in organisations. First ask them if they have occupational health. Second your own doctor should be able to refer you to talking space - or depending upon where you live you can self refer. It is good to get out the trauma from your system in talking to and with a professional stranger. For example there should be no guilt and you will have experienced trauma in such a hospital setting. Unless or until you know how to process trauma in your life it will have an affect and will impede your healing. Three, explore how you can build up your own immune system. This system is the very foundation of your health it will include nutrition (NHS nutrition is not helpful you will need to explore building up immune system via google and through nutrition specialists. For example after my stroke all I wanted to eat (because I KNOW my body so well) was fruit and oils omega oils and hydration via coconut water to get system flowing again and rehydrated. My body couldn't cope with vitamins and minerals I was too ill, once hydrated then I supported with natural products to strengthen me. I didn't eat meat again for year so body could relearn digestion and so on and so forth.That's just me and just an example to explain you need to learn about your body and how your mind and feelings can affect. for example, with a car you would send to a mechanic to fix it - no longer viable with ourselves with covid getting into hospitals quickly and so on. we have to take back our own personal power and learn to fix the car/body ourselves as best as we can. So like a car we would make sure the engine has a clear out (digestion bowels) we would make sure the oil and water we put into it was the best available. We would make sure the tyres were good (exercise and this can begin with simply sitting and rotating your toes your ankles and ditto arms - this moves the lymph around your body the lymph takes the toxins out of the blood stream. You will have toxins - toxins also come from fear fright anxiety worry too. These simple moves will ease your anxiety in turn this move the lymph - look up Prune Harris on tube she has a free post covid set of energy exercises which will also strengthen immune system.
I do hope this is all helpful. There are some wonderful people out there who have free tube videos on health and healing to free ourselves from our own toxicity through fear anxiety understanding our pain - using the basic understanding of car management as an analogy. Then we can take part in our own problems and help ourselves. ~In turn, this strengthens our wellbeing knowing we are empowering ourselves
It must be awful when I read tubes and stuff weren't put in correctly and people are suffering. I had similar with stroke situation. Eventually after six months when I was stronger I did complain - not to get anyone into trouble but to share on behalf of others who were too scared - worrying if they had another stroke would they be penalised for speaking up - I have worked in the NHS as a counsellor for their own staff, I know the NHS is not perfect. No one and no organisation is, therefore it helps or for someone you know to do the arduous task of exploring who or what can help or be done since the trauma you incurred inside the hospital. If a tube , for example, was put in wrongly they will have a protocol for healing - because it won't have been the first time. On a ventilator for a length of time is traumatic you may have experienced dreams hallucinations, talking space should help. However I would also get back to hospital I have read a few case studies on this matter the NHS is aware of the trauma people undergo however, I am unsure what they are doing to help apart from monitoring for research. You need help now. The country needs you back at work you want to go back to work. You and the NHS need to work together to find ways forward for you to become empowered so you can move forward.
Currently NHS is reactive as opposed to proactive. It has always worked this way - we can help them to help us to give us the preventative tools and skills then we become part of the solution as opposed to currently just being a 'problem'
Send me a pm / dm.I am a perfusionist. We form part of the team supporting a patient on ECMO, although traditionally we are usually found in cardiac theatre running the cardio-pulmonary bypass pump.
I can probably assist you.
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If you tap on my name (on the post) you should see a window come up with an option to message -
I have sent you a message
Life support machine. 
My dad
turning off loved ones life support
need some support please
