My name is Nic, I’m 32 year old, 6’6” Australian opera singer who lives in London with his wife and 2 year old son. Having looked through the other stories on this website it seems that I might be about the only one of those who has not been diagnosed with Marfans. Having gone through various checks and screens I do not tick any boxes so far for the condition.
In December 2009, my 24 year old brother was rushed to hospital in Queensland (technically he drove himself to the A&E department from the basketball stadium where he was umpiring – his girlfriend doesn’t drive) suffering blurred vision and dizziness. A few hours later he underwent a 9 hour operation at The Prince Charles Hospital. When they opened his chest up they discovered an Aneurism on his ascending aorta which (according to the surgeon) was “about to blow”, in addition to which he had an enlarged heart and various other dissection. To cut a long story short he has so far undergone two major operations resulting in a new aortic valve, a new aortic arch and a lot of repaired and re-enforced vessels – there are still signs of more work that might be required soon. He’s a very lucky guy! He’d not had any symptoms of heart related problems until the 3 days prior to his first major operation. It was only on reflection of what had happened that we can sit down and recognise his loss of voice (no cold or relevant symptoms), tightness in his chest and the eventual blurred vision and dizziness. Apart from his relevant recovery he’s not let it slow him down, and he’s been inspired to do the work required to commence a medical degree with the aim to specialise down the track in cardiothoracic medicine.
It is because of all the tests that I had to check for any similar problems, that I was made aware that I had a dilated aortic root measuring 4.4cm. One of the first cardiologists let me know that it was very likely that I’d need some corrective surgery in my future (I was thinking in my 50s or something). He was aware of the PEARS procedure having worked with Professor John Pepper and kindly referred me to Professor Pepper’s clinic at the Royal Brompton. After a couple of scans and tests he recommended that I would be suitable for the procedure and that he could schedule me for a few months time (summer 2011).
For various reasons the operation didn’t happen in the original timeslot and I was transferred to the care of Mr Mario Petrou. He took up a post at the John Radcliffe Hospital (Oxford) and was kind enough to agree to organise for him to do the operation there. As Tal would be very happy to confirm for you, medical procedures which are new to health trusts require much discussion, clarification, assessing, funding, etc before they can be approved.
After one false start near Christmas 2011, and after months of very hard work on the part of Mr Petrou, I finally had my exostent ‘installed’ on my return from a contract in Adelaide.
We all arrived home after our 22 hour flight on Monday 16th July, and late on Tuesday I was being admitted to the Cardiothoracic ward at John Radcliffe (CTW). I was first to be operated on Wednesday morning. Two hours later I was in Cardiothoracic Critical Care ward (CTCC). By the time my wife arrived to visit I still had all my lines in but my breathing tube had been removed. Thursday the physio had me out of bed and sitting in a chair with a little bit of marching on the spot to keep things interesting. Thursday night I was transferred back to CTW. It took a couple of days for me to feel able to stay awake for most of the day or to get my appetite back. It must have been funny passing my open door and seeing me nodding off constantly. Mr Petrou was very happy with the procedure and it looked as if I might be heading home on the weekend. Annoyingly, my body decided to raise its temperature and stay too high for discharge. So the lovely staff of CTW had to endure my frustration at having to stay in hospital until the following Wednesday. There are only so many laps of the ward or trips to the drinks machine that I felt I could endure. Tal popped in and had a chat on Monday and was very pleased to see me in such ‘rude health’. I was a little disappointed I’d not packed a few more of my own clothes for instances like this.
At just over two weeks after the operation I am feeling pretty reasonable. I don’t mind the suggestion in the literature to have a rest during the day, it fits well with my son’s routine. He seems to now understand that I can’t just pick him up or wrestle with him, and mostly is very gentle (when he is reminded to be). Lots of help from my sister and my wife and the heavy tasks are sorted. I’ve started to do a few dishes, make a meal, etc, and am enjoying the sunshine on my walks into Richmond Park!
I am really, really looking forward to getting back to singing, I have music that needs to be prepared for rehearsals commencing in September. I am trying to be patient and give my chest and abdomen time to recover and repair before I put them through their paces. I am slightly concerned about what noise/s might come out, but that’s all part of the fun, right?!
For me, there was an element of choice. I was keen to try and significantly reduce the chance of needing more invasive or emergency/corrective surgery later in life. Hopefully this preventative surgery will prove to be just ‘what the doctor ordered’. I admire my brother and what he’s gone through and overcome, but I really would prefer not to have to get more work done if at all possible!!
Thank you very much to all the staff at The Royal Brompton, The John Radcliffe, and particularly Tal Golesworthy, Professor John Pepper, Mr Mario Petrou and the staff of CTCC and CTW for all you did to make the operation a success.