Providing practical and emotional
support for all people affected
by brain haemorrhage

      Brian's Story

       

      My ordeal began on June 12th 2009. I was on holiday in Florida with my wife and also my parents.


      We had been there 8 days already when I became aware of a headache which gradually got worse as the day went on. I remember it vividly as one of the things I used to love whilst there was visiting a big golf store in the Millennium mall. On this occasion I just didn't feel right and couldn't be bothered. We returned back to the villa but pretty soon I asked my Dad if he would run me to the drive in clinic. Because I hadn't been sick at this stage the doctor dismissed anything serious and prescribed some painkillers. This was the start of me running up a huge bill to the american medical industry.
       
      Funnily enough I slept well and woke up feeling a lot better but within a few hours I was back to square one. What we didn't know was the bleed was putting pressure on the brain stem and pushing it off centre. This was causing the sickly feeling and the eventual drifting in and out of consciousness. By mid afternoon I went for a lie down and that is pretty much all I remember of the next 3 days. Marie (my wife) had come to check on me after an hour and she spotted blood on the pillow/ sheets. It was then that the paramedics were called. Marie said they were brilliant.There in less that ten minutes and three vehicles. They made me walk down the stairs even though I don't recall this.
       
      My destination was the Hospital at Celebration in Kissimmee if any of you are familiar. I went straight in for a CT scan and the results emailed to the Neuro hospital in Orlando. The surgeon himself looked at the email image of my brain (9 cm bleed in left side area) and immediately rang Marie for permission to operate. Following a short delay because of a passing storm I was flown by helicopter to Orlando where an operation to open up my brain and excavate the bleed took place.
       
      Things looked pretty good straight after the operation and they tell me I was demonstrating understanding of instructions etc. I did have a really serious setback after a couple of days however,
      Things turned nasty overnight when swelling appeared in and around the left eye socket. Apparently it was huge and at one point things were touch and go. The amount of drugs going into my body at that stage was unbelievable. When I read the report afterwards it makes you realise what a wonderful creation the human body is when you take into account the trauma it was put through.
       
      Things really took a turn on the eighth day when my travel insurance was declined on the grounds that it was caused by a pre-existing condition. I was swiftly dismissed from the hospital and spent the next two weeks in the villa we had rented. Before I could return to the UK I had to have a further CT scan to satisfy Virgin that I was fit to fly. (with the benefit of hindsight I was nowhere near fit to fly).
       
      I had been back in the UK for maybe 5 days when I relapsed and thought I was having a stroke. My tongue was twisted and doing its own thing, I was incomprehensible and generally felt rotten and I had pins and needles down my arm and into my fingers. The doctor who came out by-passed admission to Southport and got me an ambulance straight to Fazakerly from where I was transferred to the Walton centre. I was in there for just over a week and then went home. Unfortunately this was just the start of a series of relapses. I returned to the UK on July 4th but my stays in hospital continued until March 2010. My body seemed to be closing down on me. I had seven DVT's in that time, my blood levels were all over the place, I had a MRI scan for some spinal pain which in turn led the team to think I had myeloma. Fortunately this wasn't the case. I had cellulitus in my leg which made it swell to 34 inches around my thigh. That was painful.
       
      Thankfully things seem to have settled down and after various trials with different levels of medication things have now stabilised.
       
      I think it was round about August 2010 that we first came across the Support group. What a breath of fresh air that was! All of a sudden I was chatting to people who knew what I was feeling and going through. I cried after the first meeting as it made me realise the magnitude of what each one of us had been through, but also because there was a feeling of relief in that I wasn't alone in this world. All of a sudden I was one of many swapping tales and sharing experiences, it was great. I have to say that the group is as much a help to families as well. I know my wife got an awful lot out of the meetings. The Volunteers have first hand experience of what we have been through and they know exactly the questions that need answering. Their contribution to my rehabilitation was invaluable and I thank them all wholeheartedly. My tale about the medical bill is still in the hands of the ombudsman with no end in sight but rest assured I will let you know once I do. At this moment in time I am the proud owner of a bill for $248,000.00 dollars. The debt has been passed on to a debt collection company in Zurich awaiting the outcome. For those of you who have just recently suffered a Haemorrhage have faith that in time some sort of normality will return but it cannot be rushed.
      Brian
       
      p.s. if you start feeling emotional just go with it. I couldn't believe the things that made me cry in the early days. I am not as bad now but I still think a good cry does you good!
       
      Love yer all loads
       
      xxxxx