Making memories for our young family as we live with Motor Neurone & Fabry's Disease

A tango with pneumonia

October 24th, 2019

Let’s make no mistake about it, this was some serious stuff.  Sit rep, motor neurone disease, pneumonia, fabrys disease and for good measure a heart attack.

So how, I believe the pneumonia could have been avoided, but as there is no proof it’s life.  I contracted a cold, no big bother other than I don’t like them but it’s made worse by my inability to cover my nose and mouth.  I dealt with it in the normal way, even avoiding the last top speed event at Elvington, to avoid the chill.  None the less it progressed and we started to use suction, not something we normally have to do.  Gp had been out, antibiotics given, so 3 days later district nurse came to give a buscapan injection to help with secretions.  Night care in place all looks ok.  Liz put the kids to bed and fell asleep, fairly normal.  I got in to bed still requiring suction but the carer was aware of everything.  2am Liz wakes up wondering if I am ok, comes down to find the waking carer asleep on the chair in the kitchen , not just nodded off but put 3 chairs together with a pillow and the throw from our bed over her, still she had not woken so Liz had the good idea to take a picture.  I would like to take this opportunity to say the majority of my carers I employ and are first class, and I feel safe with them.  I would also like to say how much I appreciate them. So this member of staff wasn’t mine and won’t be coming ever again.  I have a monitor with night vision and sound on and they sit in the kitchen just next to our open bedroom door, making regular checks and repositioning me, clearly this was not being done and had no regard for my life.  I don’t expect miracles but to stay awake would be good, if they can’t then they should let someone know.  It has been reported to the correct authority; hence the company didn’t believe Liz so the picture has come in handy. Moving on, I woke with lots of secretions and balls of mucus in my lungs, district nurse was called who passed us to the doctor who said call an ambulance.  Few hours later it came, although from their reaction, I don’t think they thought I needed an ambulance.  6 hour wait in accident and emergency, fairly standard with loads of suction. It might be worth pointing out that the need for suction was because I couldn’t breath, which you don’t actually understand till your faced with it, it’s the point of sheer panic that you can’t get what we all take for granted , myself included.   Finally moved to AAC, then on to respiratory ward.  Still with no useful help, till 2am when I said I can’t go on like this, sectioning every 5 minutes.  Liz spoke to the nurse who called the on call physio who saved the day with deep suction, not very pleasant but she got loads out.  We got some sleep, dedication for you, Liz slept on the floor, and she won’t leave me.  The problem with mnd is people still have limited knowledge so no one in hospital can deal with all aspects of it.  Except the people living with it.  Quite often Liz will take charge of my care in medical surroundings.  Quite often as I expect other relatives will get asked are they from the medical profession. I have no doubt at all that if not for Liz I would be dead.

So the next day was spent dealing with more secretions and other issues like a heart attack , the doctor was absolutely certain I had had a heart attack, I certainly wasn’t convinced, especially when fabrys disease causes high levels of traponium, the indicator for a heart attack, after reviewing the fabrys it was decided I didn’t have a heart attack.  Some kidney damage had occurred due to lack of fluid during our stay in accident and emergency, we have been advised to put a complaint in,  I need to maintain 1 litre extra water a day to help rectify the kidneys.

I am here to fight another day; I know many don’t survive pneumonia especially with mnd.  But quite possibly beyond the odds I am still on the quest for a cure.

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