We’ve had lots happen to us over the last 6 weeks which has been hard both at home and at work. It’s led to less sleep, more calories consumed and a huge deal of worry and tears. I’m feeling now we’ve made it out the other side and the 1st April signifies many changes for us as a family as I start a new job.
6 weeks ago my father in law had a severe sub arachnoid haemorrhage. He collapsed suddenly in cardiac arrest and after initially being treated for a cardiac problem, it was found that he had had a severe bleed. He was a very healthy active person who still played regular sport. This came completely out of the blue and there had been no warning signs at all.
13 years ago, for my intensive care placement at university, I spent 12 weeks on a neuro intensive care unit. It was a hard placement, probably the most emotional I’d had and I found it really difficult to cope with. I still remember many of the patients on there very vividly as their stories stay in my mind. With illness and death I often find it easier to ‘justify’ it in my head, for example ‘at least they’re not in any pain anymore.’ It’s just my mechanism for coping. For the first time on my placement I found I could not justify anything that happened. Brain injuries appeared to occur to people who were young, active, healthy and were suddenly struck by a severe and unexpected illness. It lead me to form the opinion that brain injuries are the worst thing going – they attack suddenly, undiscriminantly and catastrophically. I honestly have more hope about a diagnosis of cancer than I do a brain injury.
So late one night I found myself sitting with my husband in the waiting room of an intensive care unit breaking the news to his 14 year old brother that their Dad was seriously ill. It was painfully obvious at that initial stage that he required maximum intensive care support and whatever the outcome of the situation it was not going to be good. Steven bravely asked early on would his Dad be better off dead – I had to concede that I felt he would. The next day the consultant asked to speak to the whole family and we were told that he was highly unlikely to survive. If by some chance he did, he would be severely brain damaged and did we want to continue with treatment. Bizarrely the conversation was relatively easy, everyone in the room felt he would not want to survive with brain damage and everyone agreed that they should let him go.
We were approached about organ donation. I’ve always been strongly in favour of organ donation. Part of it comes from that neuro intensive care placement – taking the good of organ donation from a traumatic brain injury was another coping mechanism helping to justify the situation in my head. Samuel’s heart defect further strengthened this belief as a donated heart valve will be better for him in the future rather than a mechanical one (it also motivated me into returning to regular blood donations). Family discussions were again relatively easy – we all agreed and everyone was in favour of going ahead. I went with Steven’s step mum to go through the discussions and consent for the procedure. It was a very intense afternoon – about three hours of discussion with two very lovely ladies from the transplant team. During the discussion we found out that my father in law had been on the organ donor register since 2000 and the wishes that he indicated then were followed. I’d always been a little sceptical about whether the organ donor register actually had any impact and I’ve learnt that yes it does! We learnt that ’tissue’ donation encompasses many things including bone, skin and crucially heart valves. I’d always declined tissue in the past as I feel a little squeamish about skin donation. That afternoons discussion motivated me to come home and change my entry on the donation register – they can take the lot!
We had a letter a couple of weeks ago letting us know that his kidney and liver were successfully donated and that other organs had been used for medical research. I hope the recipients are recovering well and putting their new organs to good use by living a full and happy life.
And then on to the next stage….my father in law was not the first in the family to die from a sub arachnoid haemorrhage and this has now had an impact on surviving family members. Steven has a neurosurgery appointment in a months time to explore the possibility of screening. Its not something I’m comfortable with. I swing from ‘let’s get this sorted’ to ‘I don’t think I want to know if something is wrong’. The potential impact of this on our lives scares me and my worrying and anxiety are going overboard. I’ve had several ‘helpful’ conversations with people about not worrying and as always it is easier said than done. The children have also been unsettled with everything that has happened and this has created many awkward conversations about death and dying along with the direct painful question from Samuel – ‘do people with poorly hearts die?’ I lied. Bad mother. Now is not the time to be having that conversation with him. One day we will, but not now.