By Phil Talbot
On the 7th May 2016 I was up early with my running group, NRG, to take place in a 10km handicapped race starting at Clifton Gardens, Mosman. I was running well and I had just passed Taronga Zoo, when I felt a sharp pain in the back of my head and I just collapsed and passed out.
Its fair to say I don’t remember much of the next 48 hours as I had just suffered a grade 5 subarachnoid haemorrhage, which meant an artery in my head had burst and filled my head with blood.
But luckily, I was out running with my club and a number of runners had medical experience and tried to resuscitate me, as they thought I had a heart attack, whilst waiting for the ambulance which they had called.
In the meantime, one of the runners, Dave Hawthorne, went round to my house to tell my family, who he had never met, what happened. Not the easiest call to make at 8am on a Saturday morning. They then all went to Royal North Shore Hospital.
By this time I was in an ambulance and they made sure I was in an induced coma and took me to RNS.
Grade 5 subarachnoid haemorrhage have a very high morbidity rate and those lucky enough to survive may suffer from physical and medical impairment afterwards. It was this news which my family were met with when they arrived at RNS and were advised to go and see me in my coma as this could be potentially the last time they would see me alive.
I was then taken to emergency surgery, led by Dr Assad, where I had my brain drained of blood and a coil put on my burst artery to stop the bleeding.
The first thing I remember was sort of coming around and seeing my wife, Andrea and my girls Lauren and Sophie, sitting by my bedside in the intensive care unit the following day. Sunday.
I was very groggy, still coming out of the induced coma and couldn’t speak or move properly.
However, I did make myself understood enough to cover up a large digital clock counting in seconds, which was driving me mad. It felt like the countdown on my life. I was also able to write a note to have some water. For some reason I wrote it as H20! Andrea still has the note.
Over the coming weeks I gradually improved. I still had a slowness of speech and cognitive thought, I got very tired and I developed a terrible sweet tooth, constantly requiring blackcurrant or raspberry gelato.
My highlight during this time, apart from the support of family and friends, was having the two ambulance guys who picked me up come and see me. They were in ICU and asked what had happened to me fearing the worst. They were delighted to see that I was making such a strong recovery and I was happy to thank them for their role in my survival in person.
As I got stronger and beginning to feel better I started to doing laps of the ICU ward, walking my drip round and round the ICU unit. 40 laps a day was my record. All the specialists are convinced that my recovery was due to the good health my body was in for a man of my age. Luckily all that training paid off.
Four weeks later I was well enough to be discharged and carry on my recuperation at home. I was still very tired and having trouble dealing with cognitive thinking and my speech was still slow and slurred.
About three weeks later I started getting uncontrollable shaking in my right arm and more ominously in my throat. I went to see my GP and over the next few months we got the right level of medication to deal with this issue which was probably caused by scar tissue in the brain.
In August, 3 months after my subarachnoid haemorrhage I was given the all clear, with lots of caution, to fly to the UK to visit my father who was dying from cancer. I was so happy to be able to have those weeks with him, watching the Olympics on television together and generally spending time with him which I never thought I would be able to do after my injury. Likewise, my father had been forbidden from travelling to see me. So that was a great outcome. Sadly he died that October when I had to make another trip to the UK to send him off.
When I returned from my first trip to the UK, I tried to slowly get myself back into work, just doing a few hours a week. I found this really difficult and exhausting.
My biggest issues were in slowness of thought and speech. This meant when I was in a meeting, the topic being debated had moved on and been completed before I had a chance to have my say. I also found it extremely difficult to concentrate and understand what was being said, if multiple people were talking all at once. Not a great situation to be in when you are an active board member of a fast growing company looking to being bought out.
I also found the same issues when out with friends socially. The noise and distractions and my resulting slowness of thought and speech did not make me a very exciting social partner.
This was a really low point in my recovery and I got quite depressed. What with my recuperation issues, my father passing away and issues at work and socially, I was not in a good place. This has since been diagnosed as Post Traumatic Stress Disorder.
I went to see various psychologists and specialist to see if they could help my cognisant behaviour which was not nearly as sharp as it used to be. This culminated in me undergoing a 3 hour neurological test to measure my cognitive and mental issues which was exhausting. The outcome was that my abilities were average for a person of my age. This was frustrating as I had never been average but always a high achiever, but as they didn’t have any data on what I was like before my injury they had to classifiy me as ok!
The other issue I found was that my body quickly over heats and I sweat a lot. Its like the thermostat in my head no longer works. The result is my speech slurs until I am fully rehydrated and that can be up to an hour after I have finished a run. So I was back with my running club, but not able to talk to people after we had done a 10km run.
By this time it was November, 6 months after my injury and I got a telephone call from Emily Fitzgerald from Royal North Shore, checking up to see how I was doing. So we had a good lengthy chat and I was delighted that RNS were following up with me. Little did I know then that this was all part of some research that RNS were doing, Neuroscience Outcomes from Intensive Care database (NOICE)
At the same time I saw Dr Assad and Dr Steinforth for my 6 monthly check up following a routine MRI scan. I produced a two page report and what I evaluated as my cognitive and living issues I was struggling with subsequent to the injury. They were in reality, both delighted I had recovered so well to be able to write the report and talk about it. However, the MRI scan showed that the coiling that had been placed on the burst aneurysm was being pushed off the artery and I would have to go back into surgery to have a stent placed in my head to control the flow of the blood and reduce the risk of another subarachnoid haemorrhage. Which I really didn’t want to happen.
I went back into RNS to have another operation, placing a stent in my artery inside my brain cavity. This is not as simple as it sounds as you insert the stent in the artery in my groin and then feed it into place in my brain. Unfortunately, my arteries were more coiled than normal, making the placing of a straight stent, quite tricky. After three hours of surgery the stent, which had to be shortened to get in place, was complete and I went to the ward to recover.
That afternoon, I started getting a headache, which got so bad I had to ask my wife and kids to leave me. By early evening it was excruciating and no pain killer’s were working. A specialist was called and after an MRI scan I was diagnosed with having bleeding on the brain as a result of the surgery. I was quickly taken once again to intensive care to be treated there. This time after a few days the blood had cleared and once again I got to say goodbye and thank you to the amazing staff in RNS ICU.
This was again a bit of a set back, with my cognitive issues still affecting me in my work and social life.
I gradually tried to restore my life. My work had reduced to just an advisory role and I started running again. Very gently at first and finally re-joining my running club and a year after my incident, I returned to the spot it happened and this time completed the race, much to everybody’s relief.
I then got another call from Emily Fitzgerald from RNS, checking up on me just after a year after I had my injury. At the same time, I had another MRI scan just to make sure that the stent was working properly and that Monday I was due to go for my annual check up with Dr Assad and Dr Steinforth. On the day before my check up I undertook the Sydney Half Mararthon, just to prove to myself that I was getting back to normal, although my race time wasn’t great.
At the check up, everything physically was now on the right track, the stent was working well and I was back to running. Mentally, I was still having a few issues, but they were very slowly
improving as well. Dr Assad and Dr Steinforth both said how delighted they were with my recovery so far.
Life then got back to the new normal, taking things a bit easier, not doing much work and running, cycling and swimming and doing lots of reading and word puzzles to get my mind back on track.
Six months had passed, and I got another call from Emily at RNS, checking in and we got talking and that’s when I discovered she was undertaking some follow up research on people who had left Intensive Care and how they were coping. I offered to help as I wanted to give something back to RNS and she invited me in for a chat.
At our meeting in RNS, Emily proposed I became a patient advocate and provide a patients perspective on the research RNS were doing, or were proposing to do and that’s when I got introduced to Associate Professor Anthony Delaney who heads up most of the research.
The first research project I was involved in was SAHaRA (Aneurysmal Subarachnoid Haemorrhage Red blood cell transfusion and outcomes. This was a research proposal designed to clarify if people with a low red blood count after a subarachnoid haemorrhage would have a better recovery if they had a red blood cell transfusion. Eventually this research was funded and led by Ottawa Hospital Research Institute, headed up by Shane English who came to Sydney to start the kick off meeting of the trials which are now in progress.
I also presented my case at 2019 RNS Allied Health Symposium, to support Victoria Whitfield’s proposal to have a face to face meeting with patients and family who had been in Intensive care 4 weeks after discharge to better understand the issues facing patients and families who had been in intensive care and to better help them to adjust. This is in addition to the 6 monthly phone calls that Emily and her team already do with ex patients. I strongly supported this as I felt I would have benefited greatly from a face to face follow up meeting when I left intensive care. I was also keen to talk to other survivors from subarachnoid haemorrhages to better understand how they had coped with the softer more cognitive issues. I am pleased to say that Victoria’s study got approved and is currently underway.
Strangely enough, there is no international standard to measure the outcomes of people who have suffered subarachnoid haemorrhages and what treatment they had. This greatly inhibits the understanding of how best to treat a patient during and after they have suffered a subarachnoid haemorrhage. Hence the MARIPoSA study. Measuring Attitudes Related to health Indicators Post SubArachnoid haemorrhage. This research, led By Dr Chris Andersen is designed to identify a set of 30 core outcomes that can be used to assess each person who suffers a subarachnoid haemorrhage and thus form the beginnings of an international standard to assess all future patients. I have been working with Dr Andersen to get down to the 30 core outcomes which will be used, from an initial list of over 120. This research again has been funded by the Ottawa Institute and should be ready to start early in 2021.
It has not only my everyday life that has been affected by my aneurysm. My eldest daughter Lauren was so taken by the care and attention I received at RNS and hospital life in general, that she is currently studying at UTS to become a nurse. In fact, her first work placement she undertook was at RNS. What goes around comes around.
So that is my story, from being out for a run one day to becoming fully dependent on RNS for my survival. I am immensely grateful for the care I received and I am committed to do doing as much as I can in my role as ongoing patient advocate for supporting various research initiatives aimed at improving the life and recovery rates of people suffering subarachnoid haemorrhages. You to can help by donating to the North Foundation.