Bronchiecstasis, Daily Life, Lung condition, Norfolk and Norwich Hospital, Writer's Blog

Thankful for another year?

As we begin a day of low-level celebration for my mum’s 76th birthday, so begins a time of reflection.

A little over two years ago, and following a particularly traumatic hospital stay, mum was told, in no uncertain terms, there was little more that could be done to relieve her of the constant hemopsysis (coughing up large amounts of blood from her lungs) and persistent and painful coughing and breathlessness. A doctor came to the bedside and explained there would be no more Bronchial Arterial Embolisations (BAEs) and the best outcome she could hope for was for them to make her comfortable.

Two years, many antibiotics and approximately ten further BAEs later, the rest of the Respiratory Team have thankfully over-ruled the one who gave up on her and she is, today, celebrating (albeit very loosely speaking) her birthday on Earsham Ward of the Norfolk and Norwich Hospital.

It has not been the best two years of her life and ‘life’ is not the best word to describe what has become an existence, but she is still with us and, at times, driving us mad to the point of walking away.

But that’s my mum. She is quite openly judgemental and easily irritated and expects the world to run in the same regimented fashion as her own life, with much displeasure and disappointment on display should, as is most often, that not be the case.

Mum has always expected one hundred percent punctuality and woe betide you should you be late. She will stare pointedly at the clock if you arrive a second later than arranged. Unless you are willing to acknowledge your tardiness, the conversation will not flow until the error of your timing has been pointed out. I know this is where my phobia (oh yes) of being late has stemmed from. I arrive unfashionably early for everything, my fear of beration for being late so deep-seated that I would rather not arrive at all than enter to find a room filled with people who have been willing to arrive at least on time. I can’t even be late for a Sunday morning breakfast date with my own daughter. I would rather, to the amusement of all concerned, arrive and sit in the car park for ten (ok, often more) minutes than suffer the anguish of making them wait for me. I know why I am like it, but I have no way of changing it. It’s simply not worth the panic.

So, as you can likely imagine, if the nurses are late bringing my mum her medication, or the doctors don’t see her right on time, her mood plummets and we have to bear the brunt of her gloom. Being in an NHS hospital, where staffing is tight and wards are full to overflowing, you can imagine it’s not easy to be punctual and if the nurses are chatting at their desk, which unfortunately for them is right outside my mum’s room, she will stare at them pointedly until she gets the attention- her voice clipped and irritated – and they will be blissfully unaware of their crime, if there even was one.

Mum’s condition, Bronchiecstasis, has left her permanently breathless, coughing violently at the slightest movement resulting in further breathlessness and, at the first sign of infection, which is more often than not, coughing up blood. Imagine waking up to a metallic taste in the morning, gingerly sitting forwards and, before you have even taken a step, you open your mouth and without even a cough, a large amount of blood spews forth. At times, there has been up to 400ml of blood which is more than the volume of a can of your favourite fizzy drink. According to the NHS guidelines, anything more than 100ml of blood in a 24-hour period is considered a massive hemoptysis and a medical emergency. Mum has the good sense to know that normal, for her, is anything over 250ml because if she didn’t change the criteria, she would be calling for an ambulance most days. It’s terrifying.

As she celebrates her 76th birthday on Earsham Ward and into her second week of this stay, the fifth in the past six weeks, she is waiting to find out if the radiologists are prepared to carry out one more BAE and attempt to reach the bleeding vessels they have, in the past, been unable to access. If they agree, she may spend many hours lying flat on her back with a tube in her groin through which the necessary equipment is passed and finds its way up into her severely damaged lungs, to cleverly seal the bleeding areas. At times, she has spent over six hours having the procedure, throughout which she must remain awake and cough as little as possible, which is ironic because of the condition being treated.

The rollercoaster of damaged lungs, built up mucous, swelling vessels, infected, splitting and, thus, bleeding vessels is ongoing and there is no cure as she is far too frail to undergo the removal of the most damaged part of the lung. Removing the damage would, at the very least, alleviate the bleeding, resulting in less coughing and breathlessness but her body won’t take it, so the team struggles on.

I don’t want her to spend her birthday, when we are close to it possibly being her last one on this earth, lying on a table undergoing an unpleasant procedure, but if it gives us a few more months with her, then so be it.

I wonder if I am selfish for hoping for more time with her, when her life has become a mere existence and every day is a constant struggle. But the alternative is one neither of us wishes to face right now and, selfish or not, we take one day at a time and hope she is with us for the next.

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Bronchiecstasis, Daily Life, Lung condition, Norfolk and Norwich Hospital, Writer's Blog

Bronchiecstasis – a cough too far.

My mum was in her early seventies when an already nasty chest condition, Fibrosis, suddenly became so much more. She had been experiencing breathlessness on a regular basis since before my dad, her husband, passed away a few years before but now it was becoming debilitating.

Appointments, x-rays and tests at the respiratory clinic of the local hospital revealed scarring on both but, more importantly, more pronounced on one, of her lungs. Breathing was fast becoming a struggle and everyday tasks became more than just chores, they became almost impossible to carry out. A persistent cough, often resulting in a sticky mucous, prevented this once-confident and proud lady from leaving home much if at all. Not the best condition for a recently-bereaved person who needed the company of others. Fearful that she would cough hard enough to induce vomiting, she ventured out less and less until only the most necessary of trips out were made and, only after meticulous planning.

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As a family, we found this difficult to comprehend at first. Why was our mum and grandmother no longer keen to come to our homes and spend time out with us? We pushed her to join us at events such as Christmas or birthdays or a slow walk at the beach but there was always an excuse, a reason not to join us.

Mum’s consultant seemed to evade a lot of her questions, giving the vaguest of responses. I found him quite rude and offhand, initially,  but we later discovered he was confused and a little puzzled because of the way in which her symptoms were presenting. This was not a standard fibrosis diagnosis but every six months, further x-rays and scans were taken which were giving a wider picture of the progression of the illness.

Restricting as the constant coughing and breathlessness were, none of us were prepared for the next phase. For a while before she admitted it to any of us, Mum had been coughing up blood. Just spatters at first, into a tissue, and then slightly larger amounts, at which stage she became more concerned. Having lost her husband to lung cancer, we think she had convinced herself that she was to meet a similar fate, and she eventually confided in us and allowed the consultant to progress further investigations.

One would assume that with the cough, the mucous and the inability to breath freely, the list of symptoms might end there. Surely that was enough suffering for one person to endure? But it was not to be. One morning after a particular spell of breathlessness, which included the unpleasant sensation of somebody sitting on her chest, crushing her very ability to draw breath, mum woke up with a metallic taste in her mouth. She sat up, intending to take a few sips of water, and instead was rewarded with blood pouring from her mouth. She coughed, and was presented with even more blood. She called my sister-in-law who called an ambulance and mum was rushed to hospital. They recorded that she had coughed up well over a 200ml of blood, and that was just the measured amount, so it was in fact much more.

At the hospital, mum was given a drug called Tranexamic Acid which, via a man-made form of amino acid called Lycine, prevents the body from breaking down blood clots, thus stemming the flow on a temporary basis. However, investigations were needed to find out where the blood was coming from. Scans and x-rays revealed the source of the bleeding and the likelihood of a condition called Bronchiecstasis. The irreversible scarring (fibrosis) was nasty enough but this new condition brought with it a whole new ball game. The airways in her lungs, already damaged, had become abnormally widened due to this condition, which had led to a build up of mucous, itself leading to an increased vulnerability to infection. The most common symptoms of Bronchiecstasis are a persistent cough for which there is no cure or alleviation, itself resulting in over-production of mucous and extreme breathlessness and, in very rare and complicated cases such as mum’s, coughing up blood which is caused by one or more of the vessels in the lung splitting open.

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Mum has had many spells in hospital following larger bleeds (called massive hemoptysis) since this condition was diagnosed and there have been some successful treatments of some of the split vessels. The procedure is called a bronchial artery embolisation (or BAE). Amazingly, during this procedure, the radiologists insert a needle into the artery, usually via the groin or inner elbow, and a catheter wire is placed into the artery right up and into the damaged lung, sealing off the bleeding/damaged areas with minute particles. This is all done while the patient is awake and lying on a flat surface, which is extremely difficult when you have a persistent cough. Mum has had a few of these procedures and they keep trying, although the day will come when the bleed is so severe or her arteries so damaged that they can do no more but make her comfortable. The possible future scenarios are dreadful but we try not to dwell to much on that for now.

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Mum is on a permanent low-dose antibiotic which is delivered via a nebuliser, as well as having a supply of Tranexamic Acid which she can start at home to control smaller bleeds, the agreement being that if they become worse she has to be taken straight to hospital. A massive hemoptysis, is coughing up more than 100ml of blood in a 24-hour period. Before this happens, and often as an early warning sign, breathlessness increases, which is caused by blood obstructing the airways. It’s slightly more difficult in mum’s case as she is constantly breathless, but often she feels more poorly when a massive hemoptysis is imminent.

If a younger, less fragile, patient suffers with this condition, surgery such as a lobectomy, to remove the most damaged part of the lung would be offered. This was investigated but the tests showed mum’s heart would not withstand the trauma of such surgery. So, for now, we all simply plod along from day to day. Mum does nothing much because exertion is too exhausting and she is fearful of leaving her home should an attack happen. If my mobile rings at any point before 7.00am, I can pretty much guarantee it will be my sister-in-law waiting with mum for an ambulance, alerting me to meet mum at the hospital to go through the whole life-threatening palaver again.

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Her care whilst in the Norfolk and Norwich University Hospital has been very good, overall. She has been admitted to various wards and the staff, while over-worked, are always kind and caring. As family, we have been treated with kindness and compassion, especially during her worst episodes.