Alison Edwards & Simon Benson
Alison's Progress

(Alison's) Ramblings – perhaps more properly entitled - delirium

I can finally, actually answer questions about being a patient from experience rather than knowledge.

It only took 60 years and perhaps should have started earlier as a process but there is something to say for just jumping in the deep end.

Thank goodness for being alive now, here, in Australia and being able to access the superb medical care we have here

Thank goodness for well established teams of people who smooth the entire experience. I have a lot of respect for the skills of the surgeons, anaesthetists, technicians and the machinery which makes it all possible but I think it is just as important that the art of medicine is alive and well in units such as these. All the staff were thorough, gentle, meshed into each other's strengths and somehow still made it feel that they had all the time in the world to answer your questions. It is such a pleasure to be looked after in a unit where some of the staff have worked in the same place for more than 20 years, and where there must be a sense of here we go again saying the same thing to another patient but humour and empathy and understanding win the day. From the kitchen staff and cleaners to the orderlies and nurses and all the specialist nurses and doctors who have managed to repair my broken heart, thank you.

Thank goodness for a degree of fitness and a body which generally behaves well and has meant fast enough progress to cope for someone like me, born without patience, Thank goodness for having friends and family and all the ways they help. I do apologise for not telling you every step of the way what was happening but remember, I have never been a patient before.

I did think it was odd that I was breathless on exertion. I did eventually interpret what I felt as palpitations, instead of wondering if this was what indigestion felt like, and I even started telling Simon what was happening before it became noticeable; so I have come a long way. I even grizzled when the tiredness became a feeling of being completely knackered and needing 1½ hours lying on the couch to gather enough energy for the next thing. Illness redefines quite a few things.

Medical knowledge at least allowed me to recognise that the weird sound I was hearing was both new and wrong and do something about it . Age allowed me to do my research and choose some specialists younger and more up to date than Simon or my cohort. Thank you to the two Andrews, cardiologist and cardiac surgeon who have done such a good job.

Discovering a new murmur the week you start a new dream job is not good. Having an echocardiogram the day the boss started two weeks holiday was not ideal. Planning when to tell siblings and Mum when we all have lots going on meant that I waited until I knew what was going to happen, and I missed my chances. But I didn't ever lie or intentionally mislead people. Simon rang and asked about getting an earlier date as I became much more symptomatic, and we heard on Tuesday that we could go in the next Sunday night. Simon rang or notified people as soon as he heard I was all right – that is his way of coping with this.

I am all right – I have a small neat zipper of which I am careful but I haven't needed anything more than panadol since the third day post op. I will have several months of slowly recovering strength and energy before I return to work but it is my own valve still, not a replacement, so way less complicated than it might have been.

I love people's stories and advice- it is truly amazing how many people have had their valves repaired – but at least I will not have John's problem. When it is cold, the click noice of his new valve is louder, when it is warmer, it is quieter. I can only image his surprise being asked by the airport security guard in a cold town - “are you ticking, Sir?”

I have asked many people about brain fog and the advice is just go with it. Go with the numb fingers or peripheral visual hallucinations and give up crossword or sudoku at present. So I plan to take it easy, recover fully and regain my old confidence in my body but with a new sense of the marvels of modern medicine and repair.

All visitors please be aware that this planned trajectory is ideal, that I can be grumpy when I am tired but impatience and boredom are way worse. I still have very limited “patient experience “ but I am learning.


And she is home again now!