The Holiday that Wasn't....

 

The Holiday that wasn’t

Spoiler Alert!

Did a lovely walk on Saturday 3^rd August – bagged a trig point (this is Suffolk, so nothing too dramatic) and then bagged tea and cake so all-in-all a great day.  Probably got a bit dehydrated – who knows but drank a lot when I got in…

Had a nice shower, blew my nose (HHT skin graft needs clearing from time to time) and then walked downstairs and noticed I was very breathless.  Checked my pulse and my heart was desperately trying to go, or not go, into some sort of arrhythmia.  Cried a lot but not for long.  Basically thinking “Now ****ing what!?”.  The heart lost the battle with the Afib and settled at about 100-110 beats per minute.  I was worried about the SCAD so drove to local hospital and was given Digoxin in A&E.  Seems they couldn’t give me IV amiodarone as I am already taking it orally.  Digoxin did zero and I was told I would be admitted and seen by a cardiologist Monday (this being Saturday) so I discharged myself and drove to the big teaching hospital knowing that, at the very least, I would be seen the next day.

I was admitted to A&E but heart rate only 100ish so no panic.  In the early hours I was moved into the EAU (Emergency Assessment Unit) before being moved again to another EAU ward.  Saw the cardiologist the next day and he was concerned that as I was no longer taking the Apixaban ‘blood thinners’ I could not be cardioverted.  I asked if they no longer used the 24–48-hour rule where you can shock in that time without needing them.  He sort of said “oh yeah” and said they would cardiovert either that day or Monday.  I said the 48-hour window would be coming to its end and he explained that it would not matter as I had now been re-prescribed blood thinners.  I was a bit surprised as I had always been told you needed to cardiovert within 48 hours or take blood thinners for 21-28 days.

Monday I was told they would do the cardioversion Tuesday. Tuesday I was told Wednesday. Wednesday I was told Thursday.  I saw a real jerk of a doctor – he had long wavy surfer-boy hair and really fancied himself. He managed to shoehorn into the conversation that he had been in the RAF as an emergency medic – why do so many ex-servicemen do that?  He obviously wanted me to go home and at one point said “You do know you are free to leave; you are not a prisoner”!! By this time my holiday (departing 6 am Friday morning) was getting dangerously near and my time in Afib was now four days meaning it would take me longer to recover.  Surfer-Boy told me I was okay to travel if I could walk up a flight of stairs (he didn’t actually ask me about my holiday and what I planned to do because he was such a know-all that he’d already surmised, wrongly, that I’d just be laying on a sun lounger) - but that they still planned to cardiovert the next day although I would need a Trans-oesophageal Echocardiogram (TOE) since I had not been on blood thinners, thus contradicting what I had been told Sunday – I’m sure they tell you anything at times to shut you up!. Later that night I finally got a bed in the cardiology ward. Progress since I had not seen a cardiologist for three days!!

Thursday morning, I was due to go to Papworth (right next door – joined to the hospital by a bridge) for an outpatient CT scan to do with my SCAD.  I had mentioned this daily since Sunday and been repeatedly told it was all arranged.  I mentioned it about five times the day before too.  I was up by 6 am in case the porters came early as I was due to be there at 7:40 am.  At 7:40am I was still waiting so I called the nurse who said they were just arranging a trolley and HRM.  At 8 am I was told they were short of equipment.  At 8.10 am I was told that Papworth would not take in-patients into their out-patients unit.  I was blinking furious – not only had I missed my appointment, but nobody else could have it either at a time when waiting lists are so long.  Their reasoning – nobody knew Papworth would not take me!  REALLY!!!! And nobody had bothered to check in the previous four full days since I had first mentioned it!!  Shocking waste of resources.

Thursday I finally saw a cardiologist – the top man no less, who was great - I was told they were short-staffed – apart from him there were no  cardiologists who could do a TOE (an ultrasound scan which can see if you have a blood clot in the heart to make sure they do not give you a stroke when the shock is administered) and it was unlikely it would be done.  He said I could keep waiting and it would perhaps be done the following week….  Otherwise, I could be discharged and I should get in touch with Papworth and see what the wait was for an out-patient cardioversion.  I’d already done that and was stunned to be told 10-12 weeks.  When I repeated this to the cardiologist, he was pleasantly surprised and said their waiting list was A YEAR!

Can you imagine!  Being in symptomatic afib for a year, but not being urgent enough to be treated immediately.  I would be unable to walk, train or work – thus I would be economically inactive and a further drain on the public purse.  All for the sake of 10 min procedure (20 mins if you have the TOE).  What a joke!  And while I am on this rant – there are thousands of people waiting for operations/procedures that would enable them to return to a full and active life and also work, but the waiting lists are so long they are just caught in limbo.  This is what 15 years of austerity has done to our precious NHS.  Plus these people are getting weaker and frailer by the day, not to mention the losing of confidence and effects on mental health of being left like that.   Same with the elderly – they would recover so much quicker if they could be treated quicker – they would not lose so much muscle tone and be more able going forward.

Anyway, by Friday I was trying to get used to life in Persistent Afib when the junior cardiologists told me that the new plan was to do TOE and DCCV Tuesday morning if no emergency turned up!  Well, I didn’t feel I had any choice but to sit it out.  Luckily, I was in a lovely big quiet ward with three older ladies – one moaned all the time but the other two were lovely.

An aside about the Moany one.  One day she was bleating about how she had been in hospital six times in the last year.  I was having an Angry Day and it was all I could do not to jump up and shout “Try seven times in 10 months, you old bag”.  Needless to say, I didn’t!

I was able to slowly walk down to the hospital garden (what a brilliant idea!) a couple of times a day which kept me sane plus I read and listened to podcasts and did Duolingo and wasted too much time on Facebook.

Facebook! Loads of posts moaning about foreigners – yet there I was in hospital being well looked after by Spanish, Portuguese, Irish, Indian, Senegalese, British, Thai, Filipino, Kenyan, Nigerian medics and support staff to name just a few!!

Eventually, Tuesday arrived and I was in a state of high agitation – both in case it was cancelled, but also because swallowing a tube is never much fun.  They give you enough sedation to be able to tolerate it, but not so much that you cannot cooperate when they are telling you to swallow – they spray your throat with some sort of topic anaesthetic which makes you feel like you cannot breathe – it’s one of the few procedures that I have had where I thought I would totally freak-out before the amnesiac qualities of the sedation mean you have no more memory of what then happened.

Anyway, back to my sorry tale… OMG! They got me ready between 5 am and 7 am.  I was finally taken down at 10 am where a very slow, deliberate doctor asked me a lot of questions and then said, “Right so I am ready, where is the nurse?” “Oh, she’s on her break”.  ARGH!  He then disappeared to do paperwork.  Finally, a lovely nurse showed up asking how I was. I said stressed and nervous – she was all touchy-feely and saying “tell me what you are worried about and I will reassure you”.  I could have screamed.  My rather curt reply “Can we just get on with it”.  She then spent forever asking me questions and very slowly putting them on the computer and finally (finally!) went and got the doctor.  He came back with two students and slowly explained the whole procedure to them.  I don’t know about you, but If I’ve got to swallow a pipe I just want to GET ON WITH IT!!!! He then said he would do the external ultrasound first.  After that he said it was 95% certain there was no clot, but he would do the camera (actually an ultrasound) down the gullet to make 99% sure.  But only if I wanted it!  I was fit to scream by this time and I was psyched up to do it – I would have felt a wimp if I hadn’t proved to myself, I could do it!!  I said yes yes do it!!  He then asked what I wanted to do if they could not get the camera down i.e. if I could not tolerate it.  The choices were do the DCCV anyway or cancel the whole thing and be discharged (after waiting TEN days!) and come back as an out-patient (in twelve months’ time!).  Through gritted teeth I said “We WILL get the camera down, if not DO IT ANYWAY!!”.  Then, of course, he had to explain it all to the students.  They wanted to put the DCCV pads on me straight away , but he would not let them as he “liked.to.do.one.thing.at.a.time.”

Finally (finally!), sedation, a mouthguard. He didn’t use the throat numbing stuff which was good.  I remember gagging a few times and I remember thinking “Why is the pipe square?” and then I woke up two hours later back in Normal Sinus Rhythm.  I’m not sure what happened to the two hours as the two procedures are literally a few minutes each.  I suspect I woke up, chatted and then fell asleep without remembering as this has happened to me before!

I was taken back to the ward and various things were done to me – an ECG, blood pressure etc.  I was still a bit drowsy.  Then suddenly the curtain was flung back and a hoard of nurses, including the sister, came bolting in with the red Crash Team trolley! They seemed surprised to see me sitting up in bed and asked if I was okay.  It turned out the telemetry had shown a dangerous Ventricular Arrhythmia!!  So, I was hurriedly moved to a different ward where they could keep a closer eye on me!!  Luckily, it was decided that it was just an “artefact” on the machine and I was discharged the next day.

Boy! Did I feel cr*p.  Eleven days of mainly just sitting (10 of them with my heart at double its normal pace), eating not too healthy food and stressing will do that to you!!

By this time, it was Wednesday and I spent the next few days trying to get fit so we could take a short break to make up for the missed holiday.

Ahhh, the missing holiday.  What a great plan we had for that.  Unusually for us we had prebooked it all and paid for it all upfront …………….

We were due to fly to Helsinki and spend four nights in Finland before taking the ferry across the Baltic Sea – we then had eight days in Estonia – four in the capital Tallinn and another four at the seaside.  We would then travel on to the Latvian capital, Riga (4 nights) and finally three nights in the capital of Lithuania, Vilnius and fly home from there.

It was so bitterly disappointing – especially as I knew they could have treated it straight away – without the risks of a TOE and I would only have been in Afib for 1-2 days instead of 10.  Plus, I would not have lost so much strength.  My husband is a very stressed teacher (all teachers are very stressed – being blamed for everything by management, abused by the kids and lacking resources like pens and a printing budget) and he was SO looking forward to this trip.  I felt really upset that I had spoilt it for him – not to mention having to cancel the trip to London they day I had my SCAD and the May half-term break straight after the SCAD when we normally would do something nice and instead just moped around. 

I had a week at home trying to feel better before we drove to Lancashire where we stayed at a lovely B&B in the Lune Valley – visited Morecombe and the Forest of Bowland and managed some walking but it completely wiped me out and we actually cut the holiday short by two days because I was so exhausted.  In fact, it took four days of complete rest before I felt even part-way back to full health.

And once again I have to start trying to build my fitness up AND my work absence gets ever longer.  On that subject I am due to see HR for a “meeting” to discuss my future,….

I’m happy enough with the meeting as I was going to ask for one myself, but I am annoyed that, once again, they have not mentioned that ANY meeting with HR involvement is not a “chat”, but a serious meeting and so I am entitled to have someone with me, whether that is a friend or a union rep.  At the very least, so that it is not so intimidating as the 3 vs 1 set up they have currently arranged.  Cheeky!

TO BE CONTINUED