By Greg
I thought some readers of this site may find this story interesting. In it I tell you about Trenna’s surgery to have her aortic heart valve and ascending aorta replaced. I intended it to be a stand alone story, but it turns out the memories of those times are still pretty clear in my mind, and a lot happened, so, here is Part 1 of what has turned out to be a two part story of medical success – and medical misadventure.
CAUTION: If you or someone you know is facing this sort of operation and you are looking for what to expect, this probably ISN’T the post to read. Trenna’s operation was 35 years ago and I’m sure just about every aspect of the procedure has changed.
Having said that, Trenna’s operation was EVENTUALLY a success and that valve and the graft were working fine when she eventually passed away. I think overall it is a positive story.
One Day at Work
In early 1989, some months before we were married Trenna had a medical episode at work. At the time she was working for the Hospital Benefit Fund (HBF) which is a not for profit health insurance fund.
To be frank, I don’t really know what this “episode” was but it resulted in one of the executives, Mr Stewart I think, ringing up his brother who happened to be a cardiologist and she was whipped away to to see him immediately. Dr Stewart confirmed the problem was very likely due to her Marfan Syndrome, but that she wasn’t in any IMMEDIATE danger.
Dr Mews and the Errant Angiogram
Why can she feel it? Why can she feel it!?
However, he did refer her to a colleague cardiologist, Dr Geoffrey Mews. One of the first things he did was order an angiogram. This is how that went:
The following is an extract from an earlier post “1989”.
Thur 3/5 – Fri 4/5 – RPH overnight Angiogram GM in 2023: I remember this visit to hospital, and the Angiogram. This was several months before Trenna had open heart surgery to replace her aortic heart valve and a section of aorta, but trouble was already brewing. It was early evening. I had been waiting with Trenna in her hospital room for several hours. We knew that Dr Mews would be coming to do an angiogram, a test Trenna had never had. When he eventually rolled up he was his usual laconic self (I’m sure some would say “grumpy self”) but Trenna didn’t mind, she quite liked his straight talking approach. He said he was happy for me to stay. He had someone assisting him, I don’t know if it was a nurse, a radiographer or a cardiology registrar. There may have even been a couple of people. Whoever they were, they were about to hear from Dr Mews. Trenna was given a local anaesthetic and shortly after a catheter was inserted in a blood vessel in her groin. He started feeding this tube up into Trenna and she almost immediately started gasping, groaning and complaining. Geoff: “Ahh! What’s wrong?” Trenna: “Well, it hurts!” Geoff: “It doesn’t hurt, you can’t even feel it.” Trenna: “I can! And it hurts!” Geoff: “I’ve done thousands of these. There is no way you can feel it.” Trenna: “I can, it’s here isn’t it?” Trenna pointing to some point on her abdomen. Stunned silence from all the medical professionals present. Then … Geoff (in a loud and agitated voice): “Why can she feel it? Why can she feel it!?” He was admitting that Trenna knew EXACTLY where the catheter had got to. “Umms?” and “Ahhs?” from the others present. At about this time Geoff Mews suggested that it might be best if I waited outside. Trenna later told me that after lots of one sided terse exchanges between Mews and his colleagues, Geoff calmed down, apologised for both hurting Trenna and for doubting her. He agreed that she must be feeling it, but had no idea how. Trenna agreed that the test could proceed and eventually I was allowed back in the room. However, as things hadn’t gone as expected Trenna was kept in hospital an extra night for observation. After that experience Trenna and Geoff Mews bonded a bit and she kept him as her cardiologist for many years, until his sudden retirement and premature death – mind you, he was a cardiologist who smoked!
Trenna was told by Mews to have regular reviews, and only a few months later in November 1989 she was in his office awaiting the news of more tests. We had been married about a month and at that stage of our relationship I tended not to go in with Trenna to medical appointments. I was of course, respecting her privacy.
Why are you crying, you knew this would happen one day?
Geoffrey Mews was a tall, thin guy, who took big steps and moved very quickly. He had a long triangular nose and a shock of white hair. He looked like someone who knew he was good at what he did, but also who didn’t give a stuff about what other people thought about that.
On this occasion I was in the waiting room when an exasperated Dr Mews emerged and said to me “Ahhh! you better come in”. He then immediately disappeared back into his office. When I entered less than a minute later he was saying to Tren “Why are you crying, you knew this would happen one day?”
“No I didn’t” Trenna replied, now trying harder to hold back her tears. Geoff Mews had just told Trenna that her Aorta had expanded to a dangerous size and that she would need open heart surgery to correct it. What he failed to realise was that until just a few months earlier she had had no interaction whatsoever with cardiologists. She didn’t know there were procedures to stop what had almost certainly killed her mother and grandmother.
Once I was updated and things had settled down a little he said “Do you want to do it before Christmas, or immediately after?” He was saying, “We need to do this very soon”. He also said that he often sent surgery patients to the relatively nice private Mount Hospital, but because of Trenna’s Marfans he wanted her to go to the less salubrious main public teaching hospital, Royal Perth Hospital. “they’ve got more ICU beds and more resources if something goes wrong.”
We were to learn over the years that Geoff wasn’t all that good with the flowery side of communication, though we did quite grow to like him eventually.
We opted to have the procedure done after Christmas and were given a referral to Mr Hodge, a specialist surgeon who operated out of RPH. Trenna would be a private patient in the public hospital. Hodge apparently would fill us in on what was involved. At that stage Trenna and I had no idea – and there was no Google in those days.
Reflection
We were quite shell shocked by the whole concept of heart surgery and I remember we decided to stop at nearby Harold Boas Gardens to gather our thoughts.
Neither of us had ever been to this particular small park on the edge of the Perth CBD. But it was delightful and there was almost no one else there on this weekday morning in spring.
We strolled and chatted. When we had decided to get married we had both thought it would only be for a short time, perhaps only a few years before Trenna’s Marfan Syndrome would kill her. Now it looked like she might be around longer? But on the other hand, Mews had pointed out that there were plenty of risks with the operation, so perhaps our marriage would be over after only a few short months? And anyway, did Tren want to go through a risky operation and who knows how long a recovery?
We were probably there a couple of hours talking about the possibilities, the future, if there was one, and our undying love for one another.
Nothing was decided on that spring day other than we should go to the appointment with Andrew Hodge and see what came from that.
Andrew Hodge
Andrew Hodge, the cardiac surgeon was not at all like Mews. He was smaller, older and balder. The characteristic they both seemed to share was that they had a high opinion of their own work, though in Hodge’s case he seemed to welcome recognition of that.
Hodge had some rooms in the grounds of RPH in what looked like some extensions they probably did to the outside of the building in the 1950s or 1960s.
He set about explaining the procedure to us both. To illustrate he had with him a piece of Dacron that to me just looked like a tube of white sail cloth. He then showed us a few different styles of heart valve. I don’t think Trenna was really given much choice of what valve she would get, but we were a willing and attentive audience so we learnt quite a lot that afternoon.
In the discussion about valve types he did mention that if we went with the “obvious choice” and went for the valve that operated a bit like a toilet seat Trenna would be on warfarin for the rest of her life.
“So what are the implications of that?” asked Tren.
“Well, it will be important not to stop taking it, you’ll have to have regular blood tests to check we’ve got the dose right, and alcohol can have effects on it.”
I saw a glint in his eye and I knew this was an opening Hodge couldn’t resist
Alarm bells sounded for both of us. We both liked a drink.
He explained further that the important thing was to have a regular intake of alcohol, don’t have loads for a couple of nights and then none for a few days. Well, that didn’t sound to bad so we dismissed that as an issue.
As it turned out Tren from then on could only really have one or maybe two drinks a night. It made partying quite a different experience.
His Plan
He explained that after Trenna was opened up and the heart and lung machine had taken over those functions he would remove Trenna’s aortic heart valve and a length of her aorta, measure the size of the valve required and attach the new stainless steel Bjork-Shiley prosthetic valve to her heart. He would then sew the tube of Dacron onto the valve and attach the other end to where he had just cut the aorta, somewhere near her throat.
“So,” said Trenna, “what happens if all the bits don’t fit together properly?”
I saw a glint in his eye and I knew this was an opening Hodge couldn’t resist.
“Thankfully” he replied, “there is still a role for artistry in surgery” he said with a beaming smile.
He thought the whole thing could take as long as 8 hours and that Trenna would be off work for at least a couple of months.
I can’t say we warmed to the guy, but he certainly didn’t lack confidence, so a date in early January was set for the operation.
The Operation
That Christmas I think we did a pretty good job of covering up to family and friends just how worried we were about the impending operation.
We also used the time to go and buy Trenna a nightie.
Tren was admitted to hospital at least one day before the operation, in part I’m sure to make sure she fasted properly. I stayed with her, but eventually had to go home to sleep and to feed Pickles, Tren’s long standing friend now in her senior years.
Trenna would go into surgery early the next morning and Hodge would ring me up, on our land line, early in the afternoon to let me know how it had all gone.
It was a long anxious wait. As the early afternoon came and went I drew ever more nervous. Still I waited.
Then at about 5 pm a cheery Mr Hodge rang to tell me that it had all gone well, had taken about 10 hours, but Trenna was now recovering in the Intensive Care Unit and that I was welcome to visit her.
Intensive Care Unit
The ICU was way different to anything I had experienced before. After checking in and waiting a few minutes the dedicated nurse assigned to Trenna came out. She took the time to warn me not to be too alarmed when I saw my wife! She told me that she was intubated, had 2 large tubes coming out of her abdomen, a wire going through her chest to pace her heart, lots of monitors attached to her, she had a couple of IV lines with drips attached and another tube to drain her bladder. And of course, to cope with all this, she was heavily sedated. These days to me that all sounds very logical but 35 years ago I hadn’t really expected any of that.
I girded my loins and followed the nurse in and took up Tren’s hand and tried to find a clear spot on her body to kiss her.
The nurse immediately, and constantly checked readings, checked on lines and drains, administered additional dugs, looked at wounds and took observations. Up to that point I had no real understanding of just how intensive Intensive Care was, and how amazingly skilled and dedicated the staff were.
one of them kept pulling and pulling as more and more hose came out of my wife’s mouth
There had been an incision made from the bottom of her ribs to her collar bone and it was now stitched with ugly black thread and the whole lot lavishly festooned with yellow Betadine. Trenna was lapsing in and out of consciousness but I could tell she knew that I was there and who I was.
The nurse explained I was welcome to stay as long as I wanted, and to come back whenever I wanted but if the alarms on Trenna’s equipment went off I would have to leave the room immediately. She also told me where I could make a cup of tea and have something to eat, but none of that was allowed near the patient.
About then Hodge moseyed on in to check on Tren and to collect any credit I might want to bestow upon him. We spoke briefly but he didn’t explain why it had taken at least a couple of hours longer than expected. He thought Tren would be in ICU for a 2 or 3 days, or maybe more. I don’t think I had many other questions for him.
Recovery
I spent many hours in that room asking many questions of the nurses and learning about the impressive technology. As the hours passed it was clear that Trenna was improving and over the course of the next few days various wires and tubes were bit by bit disconnected. Many still remained.
Thankfully the long thick tube down Trenna’s throat was removed fairly early in the recovery. I remember being amazed at how long the thing was. There were a couple of nurses there and one of them kept pulling and pulling as more and more hose came out of my wife’s mouth.
Much slower was the pacing wire which, as I understand it had an end touching Trenna’s heart. I remember not long before Trenna was moved to the ward I said to the ICU Nurse “When does this wire in her chest come out?”
“Oh!” said a worried nurse. Her face told me it should have come out some time ago. “Um, just a moment.”
She went away and talked to a young looking female doctor. Who returned with the nurse a short while later. The Registrar looked at the charts, looked at the wire and then grabbed it and gave it a yank.
“There you go” she said passing the end of the wire to the sheepish looking nurse.
Off to the Cardiac Care Ward
The day Trenna was admitted to hospital was also the same day I officially started a new job at the university I worked at. However, I was with Trenna and not at work. I was very grateful to my employer for the understanding they showed to me not turning up at work for most of the first couple of weeks of the new job.
After some days in ICU, and I don’t recall how many, Trenna was moved to a ward. And I used that as an opportunity to start going to work, at least some of the time. However I made a point of getting back to the hospital as often as I could.
So I was there one morning when Trenna took her morning pills and then tentatively started breakfast. She was still very weak and her chest very sore. Moments later she gestured to me and I only just got a bowl to her before she vomited.
I called the nurse who immediately started fishing through the bowl to see what undigested pills she could find in the pungent mess. She was trawling through the stuff with gloved fingers periodically stopping to ask me whether I thought a particular piece of detritus was a pill, and if so, what type.
She consulted with some of her nurse mates and the decision was made to give Tren the pills they thought had been vomited up. These included more warfarin, an anti-coagulant.
Over about 30 years of being on vigilant watch when Tren was in hospital I have now gained a lot of experience and scepticism about the way hospitals operate. I mention that HERE. But in those days I was a beginner carer and happy to go along with the experts.
That Evening
When I returned from work later in the afternoon she started to get very sleepy, and her skin very pale. Nurses I spoke to noted it but thought it was just part of the recovery process. Or at least that’s what they told me.
As the early evening wore on I was sure something was wrong. I insisted that the nurses fetch the Cardiology Registrar on duty and eventually he turned up.
With that as the final word doctors and nurses scurried off to make preparations
He definitely looked concerned and when I told him of the pill fishing incident he went away to seek a colleague. Some time later Dr Clugston, another cardiologist arrived with an echocardiogram machine.
Before long he had a diagnosis that blood was leaking from the heart and/or aorta and was filling up the heart cavity. Without intervention there was only one outcome, and they needed to operate on her straight away.
He told Trenna that he was qualified, available and happy to do the operation and we could start as soon as the Theatre was ready.
“I want Hodge to do it” said Trenna.
“We really ought to start straight away” one of the cardiologists said.
“Hodge mucked it up, he can fix it” was Trenna’s reply.
“OK, I’ll try to ring him. You’re a private patient you’re allowed to pick your surgeon, but if he can’t get here soon I’ll have to do it.”
I thought I should intervene. “Perhaps you ought to let these guys do it love. The sooner the better.”
“Hodge!” she replied.
With that as the final word doctors and nurses scurried off to make preparations and to call Hodge and give him the bad news.
Trenna continued to get weaker and I was very worried. I think her thinking was that Hodge was a very experienced surgeon whereas these other cardiologists were about our age or a bit younger.
I think she also thought it was Hodge’s responsibility to solve the problem…
End of Part 1. The thrilling conclusion to this tale of medical adventures is in Part 2, available from Sunday 18th February 2024.