More Me: My Swine Flu Experience
In praise of the NHS
In April 2014, when my mother was dying, I got a cough which just wouldn’t go away. I put it down to stress and smoking too much while watching her slip away just three weeks after a liver cancer diagnosis.
What the NHS did for her deserves a blog all of its own. Maybe I’ll write that one some day when the thought of it doesn’t hurt so much knowing she’s no longer here.
The day we met the parish priest to sort out the funeral, just a week after she died, my brother decided enough was enough and made me phone the doctors to get an emergency appointment. He drove me down, dropped me off and I saw one of the practise GPs, not my usual doctor.
She diagnosed pneumonia, issued antibiotics, sent me up to the local hospital – in my own home town – for X-rays, and told me to come back in a week. I went to the hospital just around the corner from where I live, waited about 20 minutes for the X-rays, had them taken and then went home, it was just after lunch.
Thankfully just a couple of hours later, on receiving the X-ray results, she changed her mind, phoned me up and let me know she was sending an ambulance to take me to hospital to be checked over and possibly kept in overnight.
When the fast responder arrived shortly before the ambulance, my oxygen levels were at a ridiculously low % and I was taken off to St James’ University Hospital in Leeds – aka Jimmy’s – just before tea, was admitted to a Respiratory Ward, given oxygen via a nose tube and, within less than 12 hours, had been put into an induced coma and was in ICU as I wasn’t responding to the oxygen and they needed to take over my breathing via intubation.
They ultimately ended up having to perform a tracheotomy.
Five weeks later, having nearly died twice, I was brought out of that coma.
During those five weeks my kidneys had failed to the extent they needed to put me on dialysis, they’d had to perform a chest drain, one of my lungs collapsed, I had a blood clot in my other lung and more clots in my left leg, my jugular vein and my groin which they couldn’t risk moving into my lungs and so they had to put in a IVC (inferior vena cava) filter.
This is a IVC filter.
Fun eh? They put it in through my groin. Almost six months later, they took it out through my neck.
Yes, I said neck. Under local anesthetic.
Now it’s just another one of the scars I have to add to the tracheotomy one, the multitude of cannula ones on my arms and hands and even one on my foot, where they had to try getting blood out of when my veins collapsed and the two on my back from the chest drains.
When I came out of the coma I couldn’t speak because of the tracheotomy. Now, as anyone who knows me will tell you, this is like cutting off the hands of a painter or the legs of an athlete, I like to talk, a lot. I also quite like to move about. Yeah, that wasn’t an option either because I was paralysed from the neck down.
Image: Lisa Hourin
Central pontine myelinolysis or CPM as it’s more often (not so common because it’s pretty rare) known as, is basically brainstem damage. It’s most commonly found in alcoholics who have had to have their sodium levels rapidly raised. It’s an Iatrogenesis – a condition usually caused by treatment.
In my case, it was caused by keeping me alive so hey, on a 50-50 judgement call, I’ll go with long term disability problems over being dead.
It’s weird to think of having brain damage. Apparently, it’s what was responsible for all the vivid and out of this world dreams I had which I think were a mix of during my coma and the first few days I was out of it. There was the same theme throughout them all though – of being trapped.
In some I was a fish, usually a koi carp or similar, trapped in a net and I would swim in and out of all the holes but could never find my way through the twists and turns.
In other dreams, and these were the oddest, I was in a megacity, think Tokyo on acid, with mile-high tower blocks, and I had to make my way down through each level and there wasn’t an elevator that went from top to bottom.
On each level, there would be something different, a row of arcade gaming machines, sumo wrestlers, something that looked like it belonged on the old ITV Gladiators TV show with the long poles. It was bizarre.
And then one day the dreams just stopped.
I was officially discharged on January 6th, 2015, and I’m still registered as disabled. I sleep downstairs in the former dining room on an electric hospital bed which is on long term loan.
(Update: Aug 2022, this has finally been returned as I now live in a housing association flat, having split up with my long term partner, another consequence of this devastating illness).
I have a carer come in twice a day to help with washing and dressing and that is expected to increase to more visits now I live mostly alone.
I still have this little lot among other issues:
- being unable to walk without assistance
- weakness in your arms, legs or face (mine’s arms, hands and legs, thankfully the face is okay)
- numbness, pain or a tingling or burning sensation (mine’s in my right upper leg, outside from knee up to my hip)
- balance and co-ordination problems (yeah, I drop things all the time)
I now have to use crutches to walk, anything further than 20 metres is almost impossible, and I need a wheelchair or a wheeled walker to go any great distance.
I also use that to sit and work in at home because I’ve been left with Coccydynia, another of those iatrogeneses – this was caused by long term pressure damage when I was “sat out” during my time in hospital.
Sitting out is usually a beneficial exercise for long-term hospital stay patients, in my case, being put in an uncomfortable hard surface chair while paralysed meant I couldn’t move to relieve the pressure and voila, irreparably damaged coccyx. I am in pain every minute of every day.
During my time in hospital, I also had two chest drains, both done under general anaesthetic, as well as multiple minor surgeries done under local, every kind of medical scan you can get that I know of – MRI, CT, X-rays, ultrasound. I had at least seven different consultants looking after me while I was in ICU alone.
The cause of all this trouble and strife? Swine flu. Not just plain double pneumonia but swine flu. Mine was one of three swine flu cases that year, they’d not had any for the previous three years in Leeds.
EDITED TO ADD
I forgot to mention, during all the above, I also had:
- teams of physiotherapists (it took a minimum of three of them to work with me because of my paralysis),
- occupational health therapists,
- health care assistants to help with every single task as I couldn’t move for more than six months,
- speech and language therapists (these are the guys who help you learn how to swallow and eat again),
- access to a psychiatrist if I wished it,
- visits from the local Roman Catholic priest to just chat about stuff,
- a prayer service (if requested),
- a dedicated one-to-one nurse for 12 hours at a time while on ICU (eight weeks in total there.)
I spent another week in a HDU, one week on RCU (respiratory care unit), six months on a Respiratory Ward, three months at Chapel Allerton, where there is a National Demonstration Centre in Rehabilitation for a grand total of just under nine months of hospital care.
We tried to work out how much this treatment would have cost in an non-universal healthcare system. We gave up after the first £100,000 which was after just a few days in ICQ.
EDITED TO ADD NUMBER TWO
I should also point out, that when I was ready for discharge I had to have a certain amount of things in place to get home. I also shouldn’t really have been discharged when I was but I left because I couldn’t, in good conscience, continue to take up the bed I was in, the one I’d had to wait three months for.
Because there are only eight of them in the whole of the region (at that time – see https://www.nrtimes.co.uk/neuro-rehab-bed-numbers-must-triple-in-the-uk-report-warns for the latest news).
That’s right, eight female neuro-rehabilitation beds to treat people with a similar condition to me because it is such a specialised service and the NHS is being systematically chronically underfunded for political reasons.
I’d had to wait three months to move to Chapel Allerton. My dad had had to go through PALs and get our local MP at the time involved to try and sort out the bed issue. In the end they did a bed swap. I moved to Chapel Allerton, the lady who was bed blocking (she was homeless and there was nowhere to discharge her to – that’s a whole different blog!) moved to my room at Jimmy’s.
When I left hospital I’d reached a point where I could walk using a Zimmer frame, so I gave up the bed. To get home required a team of hospital and social workers from Leeds City Council providing me with specialist equipment at home. I still have a lot of that equipment (although thankfully I don’t need the commode any more!) more than six years later.
And the direct cost for all of this to me at point of service?
This is what the UK’s National Health Service does. It saves lives and it doesn’t add to the family’s burden of watching a loved one having to fight for their lives with the additional fears of how they’re going to pay for all the treatment.
This is why it’s worth fighting for.
Contrast this with the American man Michael Flor, who spent 62 days in hospital (versus my 258 days and three years of outpatient rehab physio). His bill, which obviously he didn’t pay all of because of insurance, was $1.1 million.
NB: Obviously there is an actual cost for this, I’ve paid Income Tax and National Insurance (which goes towards paying for our benefits system and the National Health Service) since I got my first Saturday job working for Freeman Hardy & Willis aged 15. I’ve paid into the system for most of my adult working life.
This is how our free at point of use health service is funded. Not through insurance policies, although people can choose to take out private health insurance if they so desire.
I’m now uninsurable. I mean that literally. I tried to sort some out when I got out of hospital and was able to get back to my job again (I work from home thankfully) and every one of the UK’s major insurance and life policy providers refused to insure me because I’m now “too high a risk”.
I have to wait until I am 50 (*I’m now able to get insurance but haven’t tried to sort any out yet) to be able to qualify for a basic life insurance policy which cannot be refused because of “pre-existing” conditions – in my case the fact I had a pulmonary embolism – even though it was as a direct result of having swine flu and nothing else – is enough to make me uninsurable.
EDIT: March 22nd, 2020. COVID-19 is rushing through the world. This pandemic has already claimed thousands of lives.
My experiences above are just a taste of what a similar virus does to people, one we had a vaccine/treatment plan in place for. There is no cure or vaccine yet for COVID-19.
Social isolation will help prevent the spread of COVID-19. Seriously people, think about what your actions might be doing.
NOTE: Updated August 2022.
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