Pushing for The Great Idea

JH was conceived long before his conception date. Initially he started as a subtle thought, then he became a yearning, followed by a possibility and finally the idea of him blossomed into a series of coordinated efforts. He followed the route each great idea takes before it develops to acquire its final form and shape. And this idea came to change the life of his parents, who for many years longed to experience hearing that faint heartbeat, feeling that first kick, anticipating those first contractions. And with it, to feel the excitement of meeting their first child and the long-term agony that ensues in providing only the best for their offspring.

For JH’s parents, the journey had not been an easy one. Often the several failed attempts to conceive came to impinge onto their hopes and dreams. At times, they felt like abandoning the idea all together. Not unusually, they would lose their focus and forget the reasons that made them ready for this next step in the first place. They sought help from doctors and underwent several tests. Some were more invasive than others; some results were more normal than the rest.

The first baby conceived with in-vitro fertilisation (IVF) was born on 25 July 1978, in Manchester. The process seems much easier to describe than to experience. Following a series of lifestyle changes, the bodies of both partners are “prepared” to undergo this process. Abolishing stress, losing weight, reducing the consumption of caffeine and alcohol, quitting smoking and controlling long-term diseases such as diabetes, tend to confer a success benefit towards each IVF cycle. Using hormonal injections, the female ovaries are stimulated (or rather hyperstimulated) to produce many eggs (ova in latin). In a normal menstrual cycle, 1-2 eggs might be produced per month, but this process results in many eggs maturing around the same time. Depending on frequency, this hyperstimulation may increase for the patient the risk of developing ovarian cancer in the future.

IVF involves an invasive technique, whereby a needle is passed through the cervix, into the uterus, through the wall of the uterus and then into the ovaries (the factories that produce the eggs). Up to 10-30 eggs may be harvested using this method. The eggs are checked by a scientist in the lab and then the sperm is added. A single sperm can alternatively be injected directly into the egg rather than just allowing the sperm and eggs to co-habit in a lab dish full of nutrients. Following fertilisation, the first cell of the baby is called zygote. When the zygote multiplies, many cells are generated and this is called the embryo. When the embryo is 6-8 cells big it is then placed into the uterus and allowed to implant (or catch onto) the wall. Through hormone therapy, the wall of the uterus is prepared to allow maximum chances of successful implantation. The number of embryos implanted is strictly controlled to avoid multiple pregnancies (which carry more complications). The success rates vary depending on the age of the mother. Almost 50% of women will fall pregnant if they have IVF before the age of 35 but only 9% will be successful if they are older than 42. IVF is surrounded by a number of controversies such as the use of genetic screening and checks in order to select “ the best candidate”; the fate of unused embryos produced in the lab; the pregnancies occurring following menopause; the use of anonymised sperm donors; religious considerations; the transmission of infectious diseases from sperm or egg donors; and the legal responsibilities of donors as “parents”.

JH’s parents were devastated when they heard the news. Their attempts had been unsuccessful. Their hopes had been instantly crushed. But they did not give up. They reset their focus and carried on trying, thrusting themselves away from hopelessness. And when they least expected it, JH just happened. He developed in the shadow of a failed IVF cycle, in the midst of inconsolable pain and doubt, yet he took form and shape despite of it all, like all great ideas do.

This post is not just for JH or his parents. This post extends to all of my patients with great ideas. I mentioned in another blog entry that, “their journey takes them across the threshold of the ending or over the clouds of hope”. Their great ideas vary, from getting better, to being cured or even dying comfortably surrounded by loved ones. A Great Idea is not just the seed but the means to carry oneself through a period of great illness and emotional disorder. A Great Idea remains the vessel that all great people use in order to find change and implement difference. But above all, a Great Idea carries within it hope and limitless dreams. In the end, JH was not just a big dream but also a little baby hope.

Welcome to the world JH.

Cold turkey

Every year in December, the hospital mood changes. Everyone seems to be making that extra little effort to bring the festive spirit into our everyday activities. Decorations go up, sweets overpopulate the nurses’ station and Christmas cards start pouring in. With the usual excitement, I roll my sleeves up and look at the patient list. I start considering which patients will be the winners of the “lucky draw” this year; in whose notes will my juniors write the ever-anticipated ‘MFFD’ (Medically Fit for Discharge). To my non-medic managers’ delight, the ward round starts taking the form of a quest to discharge as many people as possible. Everyone is working harder to send patients back to their friends and family. After all, all patients ought to be home for Christmas. Plans are drawn, phone calls are made, family meetings take place and occasionally bureaucratic barriers are broken.

As the ward round goes on however, a different reality begins to emerge. Every year, I try to forget and alas, during those last ward rounds of the year, I am always reminded. For what I consider home and family bliss, will not be available for Mr JC, who is 83 and lives alone. Nor will it be there for Mrs DC, whose only daughter believes that her mother is responsible for all her medical problems and her metastatic breast cancer, and for this reason they have been estranged for more than five years. Mr TR will not be able to enjoy a warm turkey meal over Christmas as the friendly neighbour who cooked on Christmas day for the last 30 years passed away two months ago. Mrs OR is the sole carer of her demented husband, who has been taken to a care home since she was admitted into the hospital with pneumonia.

My job description is never straightforward but part of what I do is try to understand people’s wishes and manage their expectations. Often, their comfort does not lie within the treatments I have to offer but in the ears I have to lend. And this is why the final ward rounds of the year take slightly longer. Most people assume that Christmas is a time of togetherness, a time to be spent with the ones we love and cherish the most. But for some, there is no warm home to be sent to, there is no family bliss, nor a turkey dinner to be shared with a loved one. And until you ask, you can never imagine the complex family backstory, or the prospect of profound loneliness a hospital discharge over Christmas might mean to a certain patient.

This is a post dedicated to those patients who were disappointed when I smiled and said, “You are going home”. This is a post to consider those people who desperately wished to stay in hospital because they did not have a better place to be over the holidays. And this is a reminder post to myself for next year; not to get carried away by the festive atmosphere around me, and to rather anticipate that some people will choose hospital food over cold turkey from Meals on Wheels. To expect that some will take the helpful hand of the nurses over the chairlift in their empty homes, while some others will opt to stay in a ward full of strangers, yet so much more familiar than being alone with a demented partner, who has long-forgotten their 40-year-old marriage. Next year, I will hopefully remember that the colourful Christmas cards at some bedsides do not translate into abundance of friends and family for everybody, and that saying “I do not want to go home” is another form of bravery all together.

My job is never straightforward. In the rush to discharge patients and empty hospital beds, it can sometimes go unnoticed that certain beds needn’t be emptied. Amid the anticipation for an upcoming family holiday that fills the hospital wards, it can often be overlooked that for some patients, holidays are not an exciting prospect at all. And while striving to offer hope and comfort with a discharge note home for Christmas to my patients, it can occasionally transpire that comfort and hope are located in altogether different places and faces for different people. And unless you ask, you can never imagine.

Happy New Year to everyone, a little kinder to one another, a little more open-minded, a little more willing to listen hard and really understand.

(With)drawing the line

From the moment we take our first breath, we all strive to find the optimum way of surviving the challenges life throws at us. From the moment we realize our mortality, we all strive to avoid a difficult ending and wholeheartedly hope for a peaceful final breath.

Certain events in our lives often help reveal destiny’s plans for us, giving us some precious time to prepare for the inevitable. However, only a limited few know the exact point in time of their “flight”. I have always wondered what my reaction would be if someone told me that my time was up. What would it feel like if I knew that my life was to be terminated? Would I know the exact mode and time of my demise? And would I still have time to say goodbye? MC had all these questions answered within 24 hours.

It was a sunny Sunday morning and MC was not in the mood to go to church. She wanted to have a quiet time in and enjoy her gardening. She was 83 years old and did not have any medical problems. She prepared some toast and opened the kitchen cupboard to get her teacup out. As she reached up, she suddenly felt the most severe pain at the back of her throat. “It was as if I was shot in the mouth”, she described. The pain slowly got better but then, the most unpleasant headache started to set in. She came to hospital “to have things checked out”. Her pulse was racing and her blood pressure was different between her left and right arm. She had developed some uncomfortable chest pain and became more nauseated since her arrival at the hospital. Her chest X-ray raised concerns about her aorta. She had a CT scan of her heart and blood vessels, which confirmed my suspicions. MC had aortic dissection.

The aorta is the body’s most important blood vessel and carries oxygenated blood from the heart to all of our internal organs. Like all arteries, the aorta is formed by three layers, including a more muscular lining that helps to propagate the blood along. These layers are made of collagen fibres that are essentially the body’s glue, giving structure and support to almost everything. Veins, on the other hand, are much thinner and only have one layer, which means they are less resilient and more prone to ballooning and to generally becoming more ineffective e.g. varicose veins. Veins lack the muscular layer and, for this reason, they do not have a pulse.

Aortic dissection is a condition where the lining of the aorta tears away, and blood begins to flow in between the vessel’s layers. As a result, a second channel forms in the wall of the aorta. This impairs the blood supply to the organs and increases the chances of the blood vessel rupturing altogether. There are many causes of dissection, such as high blood pressure, old age, hereditary conditions leading to defective collagen, like Marfan’s disease and Ehlers Danlos syndrome.
Strict control of the blood pressure and a highly invasive surgery are the only ways of treating the condition. During surgery, the patient’s chest needs to be opened up (thoracotomy). The heart is attached onto a bypass machine and the blood is routed around the lungs and heart with the help of an external device. This allows the blood to cool down, which means that the body’s oxygen requirements will also decrease. A solution is then given to stop/slow down the heart (cardioplegic solution). This allows the surgeons to identify the location and extend of the dissection. The dissected wall of the aorta is sutured together and a reinforcement graft can also be implanted for extra support.

MC was a trained nurse who worked for many years on a medical ward. She understood very well what the implications of her diagnosis and the risks of a potential operation were. I spent a lot of time describing to her and her family what her CT scan showed and what needed to be done. I had also arranged for her to be urgently worked up for emergency surgery under the cardiothoracic surgeons. MC smiled all the way through the consultation. She then told everyone what she was thinking. And it was not what everyone wanted to hear.

“I will finally see Tony again… my husband. Tony shall be waiting for me”, she told us with excitement. She went on to share that she had been feeling very lonely over the last 12 years since his death. She had tried to stay brave and motivated for the sake of her children and grandchildren. But for more than a decade, MC was hoping for “a sign from God” that she was to be reunited with the most important person in her life.

She politely declined surgery and told us that she was ready to go. Looking at me with her sparkly, cheerful eyes, with her smile still drawn confidently on her face, her words were assertive and clear. She felt like the luckiest person on earth because she got to know exactly how much time she had left. She was grateful she didn’t suffer from a chronic illness and was pleased she wasn’t dying from cancer. She felt fortunate she had time to call all her children in hospital and say her final goodbyes whilst she was still lucid and compos mentis. Her wish to see Tony had at last been granted and she had a few hours left to arrange her dignified exodus. She gave the key to her house to her eldest daughter. There was time to share her last stories with her family; time to kiss everyone goodbye; time to tell them how much they all meant to her. She had a light dinner and said her prayers. She lay down at 9pm and closed her eyes, knowing this would be the last time she went to bed.

She woke up the following morning in Tony’s arms. For MC, this was the most comforting of places and the most fortunate of endings. She looked down onto her hospital bed, at the old woman she could no longer recognize. She watched her family cry in unison next to her soulless body. She heard her grandson whisper “I love you Nana”, and tried for one last time to console them. And as the minutes went by, and as her presence became more distant, her memory was growing even fonder. It was this strong memory that taught her doctor one of the most fundamental lessons he could learn in medicine and life. The drive with which doctors strive to help and treat people is so powerful and instinctive, yet it is sometimes met by an even stronger force. The force that reminds us that at times “(with)drawing the line” confers the strongest comfort to a tired body and the most sincere and honest help to a bleeding soul.

The eye of an eagle, the heart of a lion, the hands of a woman

When it was time for FA to express herself, she would ask her husband to open the cabinet drawer for her and look for her tools. She would slowly get the long tubes of paint and use her elbow to squeeze out their colourful contents. She would hold the brush with both her deformed hands and apply masterful brushstrokes of her talent on the blank canvas, one painful movement at a time. The distinct hissing sound of the oxygen device would be clearly audible in the room. Her routine had become more or less a second nature by now. Breath in deeply, a single brushstroke, breath out, and at last, a 10-second break. FA’s rheumatoid arthritis has been slowly deteriorating over the last few years. She had several treatments but most of the damage had already happened in her younger years, when the modern, more advanced treatments were not available.

Rheumatoid arthritis is an autoimmune condition. This means that the immune system is misdirected, and will attack her own joints as if they were foreign intruders in her body. Several other conditions are thought to arise from a similar process, such as Crohn’s disease, multiple sclerosis, coeliac disease, lupus and diabetes. When the joints are attacked, the body will respond with inflammation and, as the inflammation settles down, the joints are left damaged and often deformed. For this reason, treatments are designed around one principle; to calm down the immune system in order to prevent these attacks from happening, or to limit the damage once the attack has started. This is called immunosuppression. Rheumatoid arthritis can also often affect other parts of the body, such as the lungs, heart and bone marrow.

Some of the treatments have devastating side-effects. As part of her disease, FA also developed lung scarring, which made parts of her lungs ineffective. This process is called pulmonary fibrosis. As a result of this, her heart was struggling to pump blood towards her lungs, which had become stiff and non-compliant. This constant pressure and pushing of the heart muscle to do its job and send oxygen-depleted blood towards the damaged lungs, resulted in heart weakening and she consequently developed heart failure. The medical term for heart failure due to lung problems is cor pulmonale. For these reasons, FA  needed to be on oxygen at home for at least 18 hours daily.

I tried hard to explain to her the “biology” behind her problems. All she wanted to hear was that she could be home again with her husband and children. All she could think about was the theme of her next painting. Despite her illness, she could draw quicker than I could spell “hope” on the same canvas. She was hoping to go back and start mixing her acrylics to the rhythm of the hissing sound. To her, her medical problems were insignificant. She managed to derive her inspiration not from the things that would sink most people into despair, but from all the things she still had to live for. Each handicapped-but-artful brushstroke would poignantly reaffirm her remarkable perseverance: in finding the strength to apply the paint on the canvas, she was also expressing her determination to keep going and be alive, all the while bravely ignoring the continuous hissing sound in the room.

The open interpretation of a falling star

It was not the fact that he was famous that made me wanting to stay more. His presence was not there to add an inch to my worth.  It was rather his inviting and benevolent spirit that encouraged those 30 minutes I spent at his bedside. We talked about Hollywood and his recent Oscar award. He said that he was fascinated by my Greek heritage and started reciting the prologue from Euripides’ Medea with closed eyes. He put himself at the centre of the stage and asked me to imagine that I was sitting at the upper tiers of the Epidaurus. “That’s where we played it last year”. His voice commanded the same robustness we all met in his earlier movies. There was something odd but mystical about this thespian. Something serene, that allowed this old man to slip into the role of the sick patient without complaining about his state of inability.  He continued to serve his ever-lasting duty to entertain at the stage of his own hospital bed. The curtain was up again and the show was sold-out.

As he spoke to me, he touched his chest in agony. His face became pale and he started sweating. He picked up the red spray from the side table and quickly directed the nozzle into his mouth. He had ischaemic heart disease and he was experiencing angina. Just like all parts of the body, the heart also requires blood and oxygen in order to function properly. The coronary arteries supply the heart with this vital blood and they run their course through the muscle of the heart; the myocardium. Ischaemic heart disease describes a condition where the coronary arteries struggle to supply the heart muscle with oxygen. Furring of the arteries due to old age will lead to narrowing but sometimes complete blockage can occur. When an artery is completely blocked, the condition is called myocardial infarction and this is a medical emergency. There are two types of myocardial infarction, STEMI and NSTEMI, and they carry different prognosis. When the arteries are narrowed, the myocardium is not supplied with enough blood and the tissues receive little oxygen. This leads to a heavy chest pain. The symptoms are much worse when the heart has to work harder, for example on exertion or during times of emotional or physical stress e.g. very cold weather. The experience of this intermittent, heavy chest pain is called angina. The same principle applies when an athlete runs a marathon. The leg muscles receive reduced amounts of oxygen during the race and this can lead to painful cramps that can last for hours. The aim of the medication for angina is to relax the muscle around the coronary arteries so that more blood can flow through them. As more blood and oxygen flow into the heart muscle, the pain eases off. Though not a permanent fix, these drugs can improve the quality of life of patients with ischaemic heart disease and angina.

It only took two puffs under his tongue and 20 seconds in waiting. His relief was almost certain as he quickly found his normal self and his pale face met its original glow. The pained expression of the distressed facial lines slowly relaxed and gave way to a more tranquil exterior. He didn’t complain and carried on talking. What is it that makes some people so great and dignified that they never allow you to be sucked into their own problems?  What internal flame fuels some of us to keep positive and creative even at the darkest and most ill of hours?  Clearly, it takes a bigger person to be able to shield the audience from the troubled persona of the “star” and yet, remain able to connect. Whenever I am looking for these answers, I too try to close my eyes and apparate to the centre of a stage. He is watching from the upper tier in a reversal of roles. I perform and I share. The chorus chants and the curtain goes up once again. My show may not be sold-out but his certainly is.

Marching, arching and touching

You could hear Mendelssohn’s wedding march from the end of the corridor. The music was loud and clear, rising above the usual buzz of every day life (and death) on the ward. The prognosis was only “a couple of days” or rather “ a couple for days”. But this did not stop this 44-year-old lady from organising her wedding with the help of her friends and family. TN walked into the hospital with ascites; an unusually large collection of fluid in her abdomen. Though ascities can be the sign of many diseases, TN had a more sinister process spreading in her body without control. Her ovarian cancer could not be held back by chemo or other treatments. The only option was to keep her as comfortable as possible and be as honest as one can be when breaking bad news.

Telling someone that they will not be around to see the next Christmas or hold their first grandchild is never easy. Asking someone to accept that modern medicine has nothing more to offer and that there is not even enough time to seek a second opinion is a hard task. But I found all these years that there is often a single source of energy that makes this responsibility, easier to tackle and softer to tolerate; the dying patients themselves. TN told me bravely “it’s fine”. She held my hand, released a sigh of closure and allowed a scanty trickle of tears to wet her pale cheeks for a few seconds. Every salty drop was washing away some more of her colour. She whispered that she believed in love and that she was determined to march down the aisle and become a wife, even for a few days, even for a few hours.

Two days later, everything was ready. The hospital room was decorated by the nurses and the guests arrived bearing the rings and a chocolate cake. The banting was white and red and formed a ceremonial arch above the hospital bed. TN was dressed in her white hospital gown. The minister delivered the words and the vows echoed the room. She walked down the illusionary aisle supporting herself onto everyone’s imagination. But she didn’t stop. She looked back and smiled. She refused to fly out of her white gown and continued to march on until she disappeared into the light 3 days later. Mendelssohn was still playing at the background.

 

The lights are on and everyone is home!

MV was one of the most enthusiastic people I have ever met. It is not often that you come across people who are oozing with life and their presence and positive energy reverberate effervescently in an otherwise dull and unremarkable space. I feel fortunate to have come across two such people in my life thus far. Though struck by misfortune from a very young age, she always found ways of standing back up and facing whatever might be thrown at her. Ironically, towards the end, standing up became a mechanical issue rather than a motivational one. She had a fall and fractured her hip. MV slowly slipped into depression and died a few months later from a stroke.

It was believed that when the Gods were upset with someone they would often strike him/her down; the stroke of God’s Hand. Whether that was with a thunderbolt, or a barrage of misfortunes, a stroke was believed to be the calculated aftermath of aggravated fury at a divine level .

There are two major types of stroke. The commonest one is called ischaemic stroke. It is usually caused by a clot or a collection of cell debris, blocking off the blood supply in a territory of the brain. That part of the brain is starved of blood (and oxygen) and will eventually stop working. If the patient survives the stroke, then in the following few months the brain will try to remodel the remaining nerve endings in an attempt to recover lost function. It is very rarely that we see a dramatic recovery from a major stroke (large area of the brain being affected). The other type of stroke is called haemorrhagic and occurs classically when a blood vessel breaks down and bleeding inside the brain ensues.

The power of the brain is demonstrated on so many levels; whether it controls the way we move and speak to how we perceive emotions and process memories. In a remarkable array of nerve connections, the brain can transform pulses of electricity into experiences and vice versa.

When MV was feeling depressed, she was not simply sad or marasmic. She was in a state of uninspired existence. When she wasn’t eating, her body was telling us that she wasn’t interested in any nourishment. When she wasn’t sleeping, her mind was telling us that there wasn’t any reason to dream. And when she only spoke sparsely, her mouth was conveying a far bigger message than the weight of her words. Eventually, when she was “struck” we all understood. When her body ceased to move and her spirit stopped being, the answer became clear. She had left
the lights on but left the home months ago…

M

My Mantra

It is often the case that your imagination will take you in a place where you just want to be by yourself. A place in your mind where you just exist in unison with your own thoughts. When you feel that the moment of when you completely understand yourself has arrived. It is also the case that often you may not find that place and you may not savour that moment. When you blink and you are still there… Then you look for other ways to make peace with the scars that your emotions may have left behind. You finally unleash your creative instincts and when you are ready, you invite the rest of the world to your circus.

This is my blog and this is my circus

Since I can remember, music has been my compass, regardless of wanting to travel to or away from home. I always looked for inspiration at the most unusual of places and most enigmatic of concepts. Nothing, however, moves me more that the human truth. The truth of the human story that unfolds between the extremes of life and death, and tells the tale between just two emotions; happiness and sorrow. And I have been part of countless such stories, looked at life in the eyes and told the coming of death.

I am not here to say the story of other people, I am not here to say my story either. I am a physician and a musician, and I write music inspired by the human nature. I want to share my own truth as I see it trough my patients, whether their journey takes them across the threshold of the ending or over the clouds of hope.

M