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

Keep Smiling Through

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My mum is a complete technophobe. She refuses to allow me to set her up with a little computer, laptop or even a smart phone. It has taken us long enough to persuade her to use the new mobile phone we bought for her to use during her frequent stays in hospital. it took even longer to encourage her to leave it switched on during the day to enable us to call her for updates. She seemed to think we would sense when she had it switched on and call her during those brief interludes. I am sure she still thinks we get some kind of ‘Big Brother’ alert when she has the device in her hand, and she gets irritated when the calls don’t flood in.

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Since she has spent weeks at a time in the Norfolk and Norwich hospital, she is known as a ‘frequent flyer’ and many of the staff recognise her face when she arrives for another stay. Equally, she has made many new acquaintances during her time ‘inside’. The problem arises when the new friends ask mum for her email address and she tells them she doesn’t have one, preferring instead to write a proper letter. Most just back away slowly with a sympathetic smile, but one or two have pounced on me and I have ended up sharing my own email address or Facebook details, just to allow them to give and receive updates. I don’t mind. Some of the ladies she has become friendly with are real characters.

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During her most recent stay, much of it on Gunthorpe Ward which is a sister ward to the two main respiratory wards she is most familiar with, she has spent the longest spell of time in a bed opposite a white-haired, very pretty, older lady, called Jean. As I go to the ward to visit mum, I tend to put my hand up and smile, maybe saying ‘hello’ as I pass the other ladies’ beds but, obviously, I don’t intrude on their privacy. More often than not, they have visitors of their own.

Mum had another of the rather invasive procedures carried out during her stay and I wasn’t able to visit until the evening. She had left the ward before lunchtime and didn’t return until gone six in the evening, at which point she was extremely hungry. She might be poorly but certainly suffered if she missed a meal, or on that day, two. I arrived at the ward as she returned, moved her bags from the chair beside her bed and started to sit down. No sooner had I made myself comfortable did she ask me to head to the cafe and get her some fish and chips, heavy on the vinegar. I took this as a sign the procedure had gone well as she was so hungry. I headed out of the bay and to the wash basin where hands had to be scrubbed on exit and entry to the ward, with there being a ban on the hand gels due to the ward having confirmed cases of both norovirus and infleunza circulating. As I dried my hands, a gentleman came up behind me, saying he was glad he had caught me. He thought I was leaving and had been talking to my mum the previous evening with his wife, the lady in the bed opposite. They had talked about his life as an evacuee in the war and how he was currently writing his story about those times. This had led to my mum telling them I wrote stories and poetry and had been successful enough to have some published.

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He introduced himself as Clive, yes another one, and we chatted about the books we were currently reading. He told me the writer who was writing his memoirs had also written a book about a man who had written hundreds of letters back to his beloved while he was at war and those letters had not been discovered by his family until he passed away. I had recently read ‘The Tattooist of Auschwitz’ and it turned out that Clive was in the middle of the same book.

When I returned from the cafe, complete with a healthy portion of fish and chips, heavy on the vinegar, for mum, Clive came over briefly to ask for my website and said he would bring in a copy of the book he had told me all about, which he promptly did the next day. We exchanged email addresses, with promises to keep in touch over our respective relative’s health. I still hear from one or two of the ladies who have spent time in hospital with mum previously and I am sure this new acquaintance will be no different. Anyway, I have to keep in touch as I have a book to return to him when I have finished with it.

As we walk life’s complicated path, we never know when a new friend is just around the corner, often in the most unexpected of places.

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

Bronchiecstasis – updated

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 previously but now it was becoming debilitating.

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Appointments, x-rays and tests at the respiratory clinic of the local hospital revealed scarring on both, but 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.

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.

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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 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 presented with blood pouring from her mouth. She coughed and was rewarded 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, this 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.

bronchiectasis

Mum has had many spells in hospital following larger bleeds (called massive haemoptysis) 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 too much on that for now.

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 must be taken straight to hospital. A massive haemoptysis 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 haemoptysis is imminent, especially if it is due to another infection.

If a younger, less fragile, patient suffers with this condition, surgery such as a lobectomy, to remove the most damaged part of the lung will sometimes 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.

As I update this article, Mum has now been in hospital for another three weeks, following another massive haemoptysis. She was treated for two weeks for infection via intravenous antibiotics, but the bleeding has not yet subsided. There was talk of sending her home as soon as the antibiotics and tranexamic acid ended so I asked to speak to a doctor while I was on the ward that same day. No doctor came, the ward was extremely busy, and I was not happy with the suggestion of sending her home before they had monitored how she was after the tranexamic acid was stopped. I was worried that the bleeding would return as it often did, and returned home, immediately calling to try to speak to the doctor on the ward, again being unable to do so.

I frustratedly then emailed the Patient Advice and Liaison Service (known as PALS) and explained the situation to them. They contacted the doctors and the ward, and the result was mum being kept in to be monitored. On this occasion I feel justified that I pushed for this because the very next morning (when she would have been at home) she brought up over 250ml of blood. The doctors immediately decided to try another embolization but, irritated that I had complained to PALS, they implied to mum that they were only doing it because her daughter had ‘pushed for one’ which, in fact, I hadn’t. I had merely mentioned that they were sending her home without monitoring her and outlined the various treatments attempted previously. Mum called me in a panicked state thinking the doctors felt it was too risky, but they were acting on my instructions and it took several phone calls to PALS and the ward, eventually resulting in my speaking with the ward sister, before I was advised that this was certainly not the case. Unfortunately, my mum went into surgery on an urgent basis following the bleed, thinking I had sent her to her fate.

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Imagine the relief when she came back to the ward and I was able to reassure her once more. She felt that the doctors had given up on her just because I had complained. As it happens, the embolization was not successful as they could not reach some substantial areas of damage to seal the bleeds, so she continues to bleed even while on the drugs. At this stage, we feel that so much has been done and options are now becoming fewer.

 

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.

14mag-14diagnosis-t_ca1-blog480

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.

bronchiectasis

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.

bx_ct_scan

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.

nnuh_arthur_south_dpu-704x385

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.