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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