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This is a true story. Well, over 95% of it is.

Just like the global success rate of open heart surgery.

All characters are real; all of the key events are real and in sequence; all feelings and emotions described were very real.

All names have been changed.

I hope that everybody who reads it will be both entertained and learn a lot about what to expect when either themselves or a loved one experiences open heart surgery.

For the hundreds of thousands of people around the world who will find themselves in this position this year. Take comfort – it’s not a lost cause by any means.

Chapter 1 - A New Day Dawns

“A journey of a thousand miles begins with one step.” Lao Tzu

Someone was nudging his right shoulder. “Time to wake up, Benedict. Come on. Can you hear me?” Ben looked out through a fuzzy fog at a pair of faces smiling down at him.

“Ah, the first day of the rest of my life. It worked, then,” he thought dozily.

“He’s coming round. Hello Benedict. Benedict? Can you hear me?” said the nurse. Without waiting for an answer, she moved into a well-practiced routine, checking his eyeballs and looking for other signs to confirm that things were roughly as they should be for a patient straight after surgery.

He wasn’t entirely sure where he was. On a trolley somewhere. Hopefully still in hospital. His mouth felt dry and his body felt chilly. He was vaguely aware of being pinned down although he had a warm feeling of being in competent hands. That was a good start.

“Good afternoon Benedict.” grinned the big man with the bald head. He recognised him as the surgeon Massimo. “The operation was a success. We managed to repair that leaky valve and stitched up the little hole in the heart you had. I’m pleased with how it went. Now all we need to do is get you better.”

“You’re in intensive care. You’ve been out for about eight hours so far. This is Polly,” he said, introducing the nurse, “she will be looking after you for the next twenty four hours or so to make sure you get stable, then we’ll move you to another ward.”

“Hello Benedict.” she smiled. “Here, let me take that tube out of your mouth. It’s been helping you breathe while you were out. You should be OK to do that on your own now. Could you cough for me now while I pull it out, please?”

He gagged and coughed meekly as she gently tugged the tube out through his mouth. He was surprised how long it was. He was glad he wasn’t awake when they tried to put that in.

“Hold this” Polly said and handed him a neatly rolled-up towel.

“This is your new best friend. Hold it against your chest whenever you want to move. It will help protect your breastbone when you clear your throat or shift position. It forces your arms in close to your ribs. That limits movement so it doesn’t hurt so much.”

As she placed it on his chest, Ben noticed a large dressing and felt rather than saw other attachments. He already knew about the one in his right hand but there seemed to be a lot more going on. Mind you, he couldn’t really be sure as he still felt really groggy. And chilly. Now she had mentioned it, he could feel his chest was a bit tight.

“Try to cough about five times every thirty minutes or so. It will help to clear your lungs,” she said.

Ben clutched the towel to his chest and gave another feeble little cough followed by a tiny squeak as the movement gave a gentle tug at the stitches in his chest. His throat felt raw. “It’s as if a big tube had been shoved down it and left for eight hours,” he thought and inwardly smirked at his own wit.

“Yes, it probably feels a bit raw so it’s likely to be a bit sore. But it’s important to start breathing deeply as soon as you can so your lungs are cleared naturally.”

Bit by bit Ben was becoming more aware of his surroundings. He vaguely remembered reading that the valve repair operation would include having a machine to do the breathing for him while he was under, so it was important he cleared his lungs now that he was back in the land of the living.

Polly grinned at his squeak. “That’s a good sign, though. You’re waking up. Now, you’ll probably feel quite a few things attached to you. I’ll just explain what they are for. They’re all pretty standard.”

Working from top to bottom, she pointed out the cannula in his neck, the thick dressing protecting his sternum, an unexpected pair of drainage tubes at the bottom of his chest, the cannula on his hand and a catheter in his penis. They were attached to a battery of machines on a trolley next to him, quietly bleeping away, apparently monitoring everything going on with his body. And he was wearing a pair of very tight, knee length, toeless white socks.

As he looked down he thought that whoever had managed to insert that catheter in such a chilly environment had done the equivalent of threading a camel through the eye of a needle. Very impressive. He grimaced at the thought of how that was done then once again grinned inwardly. He thought the socks looked ridiculous and decided that someone must have been heaving away at him to get them on in the first place.

“These nurses must be very strong. Crikey, I must have been really out of it,” he thought.

Then he moved his head to the side and felt a quiver of concern as he imagined the stitches in his chest tug once again. Surely there was no way they could pull apart, was there?

“Any questions? There’s no rush. There will be someone with you all the time now until you move on.”

There was only one possible question to come up with. Nothing to do with the people in the room, or whether his wife Jamie knew he was awake, or the awesome array of high technology, or whether he was going to live. Oh, no. Nothing so clever.

“Could you call me Ben, please?” he said. “I only get called Benedict when I’m in trouble with my mother.” At another time he would have added “Or the police,” but even in his dopey state he realised that a little joke like that wouldn’t have been appropriate for now. Not with these very serious people who had only recently had him laid out on a slab with his heart literally in their hands.

Everyone has irrational hatreds. The use of ‘Benedict’ and having to give his date of birth were most certainly two of his. Two of a growing number, if the truth be known. But this was current and so it mattered.

He could just about accept Benedict being used in formal situations as it was on his birth certificate and thus on all of his important documents. The rest of the time, he truly loathed its use, particularly without his permission, and he really didn’t need any more stress at the moment. It didn’t matter that the stress would be self-inflicted, infantile and pathetic. No, he had open heart surgery to recover from and one way he would do that was to be called Ben and not Benedict. Capisce?

“Ok. I’ll do that,” she said with a smile. Ben felt rather than saw her roll her eyes at Massimo.

Now that the key question of the moment had been answered, Massimo said that they would leave him to get on with things and withdrew from the small room.

He had expected to be sleeping and dreaming of fairies and unicorns for the first twenty hours or so, rather than feeling irrationally stressed about his name.

A few minutes later, after checking the screens, Polly got back to business.

“You may occasionally feel some pain. Here, hold this,” she said, pushing a small tube into his right hand. “If you think you need any painkillers at any stage, press the button on the top. It will give you a small measure of morphine. Don’t worry, it’s controlled and won’t reopen for five minutes after you’ve used it. You can’t overdose.”

Ben remembered his mate Simon telling him about his own operation. He had been just twenty one years old and on the cusp of a top sporting career. “The only advice I’d offer is that when it comes to painkillers, don’t be a hero. Use them. I didn’t and regretted it.”

Simon had gone on to have a long career in first class sport after that, so it had given Ben confidence that a full recovery was possible. At a time when he had been struggling to get any specific answers from the medics about recovering from this operation, it meant that anything Simon said had immediate credibility. Ben especially liked the thought of not needing to be brave at first. Not that he would need it, of course. Oh no. But it was useful to have a fall-back option.

Ben pressed the button. Felt nothing. Pressed it again, just to check what he had been told. He was a man, after all. It was in his genes to check. Felt nothing again. Maybe he was still anaesthetised.

He became aware that his back felt tight and remembered something that Charlie the anaesthetist had said the previous afternoon. Charlie said that opening the chest and moving the ribs apart would mean that there would be unusual stresses on his back as the rib cage was moved aside.

Of course. How obvious. Ben hadn’t thought about that before, yet it was only basic mechanics.

As a result, Ben saw this discomfort as a plus. It was confirming his expectations and so was A Good Thing.

His last thought was to wonder whether everything would go as he hoped over the next few weeks. He had a plan. It would be nice if it all fell into place because then he would be back to his best in a month or two.

He pressed the button again and closed his eyes.

Chapter 2 - The Road To Destiny

“Expect the unexpected.”

Precisely three hundred and thirty three days earlier, Ben had been enthusiastically helping his friend Stuart celebrate the news that he had been given the all clear from prostate cancer. There was a lot of wine involved and as the day progressed the conversation briefly turned to his own health.

He was feeling pretty good, he said. Fairly confident. Mind you, although he was exercising more and more each month, he could feel himself getting older.

“I feel like King Canute trying to stop the tide. It only seems to be slowing up the rate of decline rather than improving things,” he grumbled.

He got breathless much more easily and it was getting to be a challenge to stride up the steep hill from town. In fact, a couple of times recently he had needed to stop halfway to get his breath back. Admittedly, both times were soon after a heavy gym session, so that was probably understandable. He was simply getting older and had to learn to accept it.

He also had a regular little cough and sometimes his acid reflux was a bit painful. Oh, and Jamie was going on about his breathing being erratic and shallow while he was asleep.

Stuart started banging on again.

“And you haven’t had your prostate check yet, have you? Please do it. I couldn’t recommend it highly enough for men of our age. It saved my life. Book it today. It’s not a joke. Please get it done.”

Ben promised he would, even if only to stop this focus on him. This was supposed to be Stuart’s day.

Ben had a positive nature as a matter of choice, mainly because he preferred it to the miserable and negative alternative. It had proved time and again throughout his life to be the better approach.

His outlook was encapsulated in the phrases ‘there’s nothing you can’t learn from’ and ‘you can find something positive in everything that happens’. He was also very aware that everybody’s attitude influences people around them, which is often reflected in the way they are subsequently treated.

Attitude was also the one thing that was always his choice: nobody else could choose it. In that respect he felt he always had an element of control of what went on around him. It was never total because he knew that occasionally under stress he forgot to choose and reacted with instinct and emotion instead. That was always when trouble started, although he still hadn’t managed to master that simple fact.

Ben was good to his word and went for a check-up. When the doctor said he heard a small whoosh from his heart, he wasn’t overly concerned. Yes he would go for another test. No problem. He had just been told that his prostate was fine anyway, so Yay!

He was still quite happy despite each subsequent test revealing that the problem was worse each time. “It’ll be OK,” he tried to assure Jamie as they waited for the next test. The fact that the wait between tests was so long implied to him that it couldn’t be serious. They’d have him in straight away if it was. Surely?

There are many countries around the world where there is no real concept of a waiting list. Ben didn’t live in one of those. In his country, there was a Process to be followed and that was that. The patient fits into the Process and not the other way round. It meant that he had to wait until the Process was ready. If it was full, well, he must wait until his turn.

First there was the twelve-lead electrocardiogram – an ECG – and it suggested that there was a potential issue needing further investigation, so he was sent to a specialist hospital for an echocardiogram. This showed that there was actually something wrong and it was a bit more than small. However, quite how much more than small wasn’t clear, so he should have an even more accurate test. He would be put on a waiting list for a Trans-Oesophageal Echocardiogram, known internationally as a TEE.

Meanwhile, he was advised, it just may be worth completing any ongoing dental work because the gums were the easiest way for rogue viruses to enter the blood stream and potentially affect the heart. It may also be worth checking his eyesight. What was there to lose? He arranged for checks on his eyes and teeth, although it didn’t help the growing concern at home when he found he needed some new spectacles and the dentist gave him his immediate attention.

The longer the wait for an appointment, the more convinced he was that this couldn’t be anything serious. In his mind, a positive outlook would win out and eventually silence Jamie’s concerns.

Jamie attended every discussion about these tests. Her deep and thorough medical knowledge was invaluable in catching the subtle implications of the jargon-filled sentences that were thrown at him. The downside of course is that she was also aware of what could go wrong or what the implications of one decision over another could have. So naturally she had concerns.

Ben, though, put it to the back of his mind and got on with his work. He was busy enough at work anyway, and was planning a major holiday for just the two of them in three months’ time.

Eventually a date came and he went for his TEE.

This was a much more serious procedure that took up almost a full day. Rather than hanging around a waiting room as usual, this time he was allocated a temporary bed. The TEE was a physically uncomfortable experience and he didn’t enjoy it, gagging on the camera as it was eased down his throat despite the light sedation.

When the cardiologist reviewed the results and confirmed that actually, yes, there was an issue with his mitral valve and that it was serious, he started to think for the first time that this could be real. Then when she added that it was so serious that they should bypass the normal route and contact the cardiac surgeon directly, he actually felt a little nervous.

“He will be in contact with you very quickly to arrange an appointment,” she promised. In the end, ‘very quickly’ meant two weeks, which gave him plenty of time to stew in his own thoughts. Stress and worry tussled with a determination to stay positive and find a way to make the best of things, regardless of how concerned he got. Most worrying was pointless anyway.

Ben was a firm believer in preparation. He wasn’t keen on unpleasant surprises and always felt a lot more confident if he had an idea what was coming up. “Proper Prior Preparation Prevents P#ss Poor Performance” was one of his mantras that he used in all aspects of his life. He remembered being introduced to the phrase by quite possibly the least organised man he had ever worked with, a technical genius with wild hair and a manic look in his eyes. The memory always made him smile.

He started to look into what it could all mean. There was plenty of technical information available on the internet, which was probably as clear as a bell if he spoke Latin and was a practicing doctor. But he wasn’t, and as a lay person it was a challenge to relate to it and to appreciate the implications.

He researched more and more although kept his knowledge and learnings to himself. This was for his information – just in case. Jamie seemed to be too keen to expect the worst possible outcome and he wasn’t interested in talking about what would go wrong. He wanted to know what could go right.

Three questions dominated his thoughts: What will it mean for me? How long will I be out of action for? And is there anything I can do to speed it up? He had a major holiday to go on and as a self-employed person it was essential he could tell his clients when he would be off and for how long because that had a direct impact on his income. He wanted to know this information yet couldn’t find it and nobody would tell him.

The more he researched, the more confusing it became and the further away from the answers he felt. Everything he looked at seemed to conclude that ‘it depends’ and didn’t elaborate. It was frustrating as he now accepted that a procedure of some sort was probably going to be necessary and he wanted to know what to expect.

He did find a couple of notes where it was suggested that ‘recovery could take four to six weeks’ so he decided to use that as a starting point. Six weeks is a long time although he could still be on the flight in two months if everyone got a move on.

He presumed it would be uncomfortable, and he guessed he would probably end up with a big scar on his chest and become a member of the famed zipper club for veterans of this type of operation. He would do whatever he could do to make his recovery as rapid and complete as possible. Although he was getting a bit nervous, especially when he saw some of the graphic images on YouTube, he was still upbeat.

The word ‘recovery’ has different connotations for different people.

He decided he would define his recovery as being when he got back to the level of fitness and functionality he was at when this little plumbing issue had first been identified. That gave him an end target. Some more digging unearthed the useful gem that mentioned that people could think of returning to light work after about eight weeks.

That was helpful. At least there was an idea now, even if eight weeks sounded like a ridiculously long time. Probably over-cautious. Nevertheless, he started to think in terms of being back firing on all cylinders in eight weeks. This was after all a new experience for him so he decided to allow for the maximum possible time and expect to be ready earlier. That was another of his little mantras – ‘Plan for the worst and hope for the best’.

So - he would probably be out of work for about two months. The more he thought about it,  that could be quite useful. It would certainly test his savings, but it would also give him a chance to catch up on a few personal projects that had long been on the back burner. He started to get a little excited at the prospect. Something positive could come out of this, so bring it on.

He started to think of things he would do to ensure he hit the eight-week mark for his recovery. There would be the physical bit and he knew that there would be a strong psychological element.

He would get as fit as possible beforehand, then spend the recovery time walking in the sunshine and countryside, doing activities that he knew he would enjoy and would bring a smile to his face in between his personal projects. A regular flow of the feel-good dopamine would do him more good than any drugs that could be prescribed. What had he heard? The brain contains the most powerful drug cabinet in the world? That sounded about right. He would tap into that.

He also knew that it would help to eat well. He already ate plenty of fresh food and cookies and sweets were limited to occasional binge sessions. All in all, he felt his own consumption wasn’t too bad already, so there shouldn’t need to be big changes. Yes, he was a bit overweight, but that was probably down to the beer and wine. He’d eat well and cut the booze down for the first six weeks. Shouldn’t be difficult. That would surely help things along. He may even shed a few kilos while he was at it. That would be a nice little bonus.

He had the start of a plan, which was important in his world. A plan provided a big picture to focus on when things got awkward, which he knew was certain to happen. It would help to take away some of the fear and trepidation. With a plan he wouldn’t be stepping into the unknown each day and he knew he could and would adjust it as time moved on and he found out more. ‘Plan – Do – Review. Then repeat’. Yet another of his important little mantras.

Finally a date came through for an appointment to meet with a surgeon called Massimo. He felt prepared, whatever the outcome. He had done his homework and that had helped to keep a lid on his emotions. Today the positive attitude was winning, although he had to admit that the previous weekend the anxiety and fear of the unknown had really had him by the throat.

As he set off for his appointment he felt pretty good. He was fit for a man of his age and all in all felt cheerful and hearty. Whatever news this guy Massimo came out with couldn’t be too bad, could it?

Yet when his name was called out his knees were shaking uncontrollably.

Chapter 3 - A High Impact Half Hour

“A major life decision is never a choice but rather a realisation that the decision has already been made.” Doug Cooper.

“So do you want to go ahead with an operation? You probably should,” said Massimo.

Eek.

That made it real. VERY real.

No more hiding behind faint hopes that it was all a terrific misunderstanding or a mistaken identity that would give him an entertaining story to tell for years ahead. No chance.

At the start of the consultation he had felt that generally things were OK. Now he felt the opposite.

It had been a very frank discussion with Massimo. On the bright side, he was getting commentary that applied specifically to him, rather than a generalised ‘it depends’. On the not-so-bright side he now knew that something really was wrong. And it wasn’t good news.

Massimo had probed with a few questions and identified a classic series of symptoms. Ben had presumed that the breathlessness, the shallow breathing rate, the increased heart rate, the snoozing, slowing down and regular fatigue was all a part of his reluctantly getting older.

“It’s not you getting older. You’re ill.”

Ben took in a long slow breath. Externally, he appeared calm and in control. Internally his mind was churning and he actually squinted as he tried to take the statement in. He could feel white coat syndrome crawling through his mind like a physical force that he was powerless to resist. So much for being in rational control of his emotions.

He had no idea what his mouth was saying. All he could hear was his mind screaming “This guy is a professor and he says I’m ILL. So I must be.”

Up to now he had convinced himself that, if anything, he was merely damaged and damage could be repaired. Ill was different. Ill meant that a full recovery by his definition wasn’t an option. Ill meant there could be more wrong. Ill probably also meant radical changes to lifestyle.

This was disastrous.

Meanwhile Massimo was still talking. He had considered the option to run some more tests by giving Ben a chest monitor to wear for a time. However he believed that would only show what he already knew – there was a mitral valve leak that was at the top end of the severity scale and it had been getting worse over recent months. He also said there was a septal defect, which Jamie quickly translated as being a hole in the heart. A small one, but a hole nonetheless and Massimo added that it won’t have been helping things.

“Everyone is born with one but it usually closes up. In some it doesn’t and for many it goes unnoticed all their lives, so it’s not major. It would be useful to fix them both at the same time though.”

He had explained that the valve is a little bit like a parachute that gets pulled into place to prevent blood flowing back towards the lungs. “It’s as if some of the strings have stopped working properly, so the valve can’t close fully and the blood is pumped backwards rather than out into your arteries.” Apparently a lot of it wasn’t getting pumped in the right direction.

No wonder Ben got tired. His muscles were getting considerably less oxygenated blood than they needed. Exercising was actually making things worse because his heart was working harder and harder to provide less and less of a result. The answer was easy. Those strings just need to be tightened up or reattached.

Massimo always preferred to repair a valve rather than replace it if at all possible and there was a pretty good chance that would be feasible. This was a bit of good news to hang onto.

If it was replaced there was a choice of either a man-made valve or one grown out of pig or cow tissue. Although the replacements were getting better all the time it would eventually wear out and the procedure would need to be repeated at some time in the future. And it would mean taking pills for the rest of his life and possibly a little clicking sound on each heartbeat.

If it could be repaired, he may well be sorted out in a one-off visit and there may not be any need to take pills other than aspirin. He’d have to take some for a few months while he recovered, sure. But not for life.

A repair was preferable although Massimo explained that it would be Ben’s choice about which option to take if he decided to go for the operation.

And of course one of Ben’s choices would be to ignore this conversation, walk away and take his chances. Although there is a success rate of well over 90% for these operations, there is still a small chance that things can go wrong. In Massimo’s opinion, though, his heart would probably fail by the end of the year and that could end up either being terminal or creating an emergency situation where the odds would be much worse.

“So do you want to go ahead with an operation? You probably should.”

He and Jamie exchanged looks. It was a complete and utter no-brainer.

Of course he should go ahead with it, and as soon as possible, please. The chances of anything going seriously wrong were very low and his own fitness would reduce those a bit more. It was either that or face the prospect of slowly becoming more and more inactive. Not an acceptable option, thanks.

Now he really did want to know how long he would be out of action, what was actually involved and what could he do to make it quicker or easier.

How hard could he exercise? He wanted to be as fit as possible going in to hospital so it would help his recovery.

And how soon can it be done? Will it be two weeks or three? He felt it was bound to be that close because they had been told that this was urgent, after all. He would have his work cut out to make sure he got his project into a position to hand it over in that time.

Massimo explained that everyone is different so he couldn’t say how long he would be out of action other than “typically two or three months or maybe longer.” The hospital would let him know the fine details of what to expect as the operation got closer. Meanwhile, just do moderate exercise if you must and get plenty of rest. Oh, and the waiting list for the operation was approximately twelve weeks.

“Twelve weeks?” Ben tried to keep the alarm out of his voice. That’s three months. If he’d heard Massimo right, he could be dead by then.

The operation didn’t worry him in the least. It was performed hundreds of thousands of times around the world each year; there are teams at this very hospital who do it every day of their working lives; there is a success rate of a long way over 90% and it’s been getting done since 1928. There were no surprises to be had, so it was almost certain to be a success.

However the prospect of waiting for another three months did. No wonder it felt real. It was terrifying.

And what the f#ck was ‘moderate’ exercise?

Chapter 4 - The Pendulum Swings

“Patience is not the ability to wait but the ability to keep a good attitude while waiting.” Joyce Meyer

Now that a well-known consultant had told him that he was unwell, things felt very different indeed.

The very first thing he had to do was cancel his long-planned and already-paid-for holiday. He sincerely hoped that the travel insurance would cover the cost, although somehow doubted it.

The waiting that had previously merely irritated him now started to prey on his mind because there was now a potentially bad outcome from a delay, one that would affect him. He tried to maintain a calm exterior yet he couldn’t ignore how the worry was affecting him, especially when he hadn’t heard anything six weeks after the meeting other than the fact that he was “on a list.”

The stress and frustration were building and he couldn’t even release the tension by using his preferred method of doing something physically intense as that could easily backfire on him.

He mentioned his situation only to a select handful of people who would be directly impacted when he was out of action. He couldn’t say when it would start or how long it would last. All he could do was warn them that they would be affected at some point.

It was not knowing that was the problem. The uncertainty was hard.

He always felt comfortable when he thought he was being constructive. So he created a schedule of activities based on the estimate of a twelve-week wait. As well as working on his stamina and flexibility, he wanted to get work into a position where he could hand it over cleanly. He wanted to get his personal papers straight, too.

Getting his papers straight meant he could leave things tidy in the unlikely-but-still-possible scenario that it could all go wrong. It demanded that he at least think about the prospect. He was aware that that line of thought had the potential to lead him into some very dark areas and vowed to keep a tight rein on it.

He was conscious of the advice to do only ‘moderate’ exercise, so he felt he needed to work for longer and longer to get any enjoyment or benefit. That soon started to take up a disproportionate amount of his time yet he felt he was still going downhill.

End of free sample

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