February 2026 - bankrupting the NHS again!

 

February 2026 – yet another month of drama and health problems

 

Oh my god, oh my god, oh my god, WTF WTF WTF.  Is this going to just go on for ever!! Barely do I post one positive update when something else happens…

 

The day after my last post I saw my lovely EP at Royal Papworth Hospital.  I was happily in Normal Sinus Rhythm (NSR) when they did the ECG.  I told the EP that I had had runs of ectopics and a bit of Afib and I thought he seemed less than confident that the Minimaze had worked.  Incidentally, I also apologised that I had not told him beforehand that I was having it done, but that it had all happened rather suddenly (see Oct 2025 posts).  He was fine about that – of course, the only reason he knew about it at all was because I had scanned my discharge letter and sent it to his secretary – despite my request, Sheffield had only sent the letter to my local hospital.  Honestly, the NHS can be hard work sometimes.

The EP agreed I could stop the betablockers as my ankles were so swollen – though I confessed I was suffering from ‘health anxiety’ and ‘hypochondria’ and to my great surprise he said “Well, you have been through an awful lot – all the afib, ablations, the SCAD AND the HHT” – I was quite touched actually.

We then we discussed what would happen if I went back into AFib- he reiterated again that he would do no  more ablations but would cardiovert and start me back on Amiodarone to see how long that would last.  Then it would be permanent Afib with the option of the dreaded Pace & Ablate procedure….

That was Friday 30^th January.  Sunday 1^st February – I went into Afib again.  This time it did not correct and by Monday morning I was feeling very faint even though my HR was only 90-120.  So, I tool myself off to my ULH (Useless Local Hospital) – I waited an age to be seen and then spent ages telling them all my history – 14 cardioversions, four ablations, Scad, Minimaze, HHT…  I politely told them that IV amiodarone worked really well for me before, but they decided they knew best and gave me oral amiodarone which did nothing (especially as it takes a good two weeks for the body to absorb it – whereas the IV would give it in one big jolt).  They sent me home the next day at 0930, but I was still waiting in the discharge lounge at 1730 for my drugs!!!  Amusingly, while waiting in my hospital bed, the same hospital rang me with an emergency gynae appointment despite me only chasing it the day before!!  So not totally useless!!

When I got home, I had the results of my liver scan – some enlarged arteries- many shortcuts between arteries and veins – therefore, liver not diffusing properly. But I guess I have been like this since I was born with the HHT.

Meanwhile, back in the Afi world, I decided that since this could be the start of Permanent AFib I had better make an effort to get used to it – despite feeling very light-headed every morning I forced myself to walk or do weights and felt a lot better for it!  My husband seemed surprised at how upbeat I was when he got in from work! I think he thought I would be a sobbing wreck (TBH, I rarely cry as it sets off fast HHT nosebleeds!)

Previously, when I have had Afib it has been very fast 145-195.  This has usually meant a cardioversion straight away OR, if treated at the ULH, to be drugged up to the eyeballs to force the heart rate down to the 80s but leave me completely unable to function. 

(((OFF ON A TANGENT - I was once at the ULH with a heart rate steadily climbing – it got to 170+ and I was struggling to breathe so they decided I must have a cardioversion.  For some reason, they decided to give me 5 mcg of bisoprolol betablocker, despite my warnings.  As soon as I swallowed it my HR dropped from 170-180 levels to 80!  I started to black out and had to be tipped up at a 45-degree angle with my legs in the air so I’d stay conscious.  Then the cardiologist said “Ooh, but it worked really well” and for a split second of terror I seriously thought they would discharge me like that!!  They didn’t, but when they did the cardioversion they had a long pause of 7 seconds before the heart started beating again!  Well, if you batter the Heart Rate into submission with intravenous flecainide, IV amiodarone AND betablockers I expect the poor thing would struggle to work normally.  This was the same occasion where one of the cardiologists had all the wrong info about me and would not believe my account of what drugs I had had and what I had taken (turned out they had overdosed me on flecainide before giving me amiodarone – they are not called the ULH for nothing – this has been written about in detail on a previous blog).)))

Back to the story – this time I couldn’t really notice that I had AFib except in bed – walking uphill is really difficult and so are stairs.  I also felt quite relaxed!!  No longer were we constantly worrying about me going into Afib.

And, finally, the FODMAPs anti-IBS diet started to work after 2.5 – 3 strict weeks.  In fact, that and coming off the betablockers meant my weight dropped by 8kg in January!!!

Better still, the Arrhythmia nurses at Papworth confirmed that my EP had agreed to me having a cardioversion although the wait is a minimum of three months…  Cheekily, I also informed my lovely cardiologist at ULH (yes, there is one good one – lovely man) just in case they could see me sooner – cover all the bases!!

I was now just one week away from going to France at half-term and so I phoned the insurance company to tell them I was on a waiting list for a cardioversion, but, ironically, I was less likely to need hospital now as I would not suddenly go into AFib.  Thus, commenced a Battle Royale with them.  It’s so long I think I will put it in a separate blog post actually.

We had booked a trip to France and I was determined to go – last year I cancelled trip after trip and ruined it for everyone, so this time I thought I’d definitely go to France even if I couldn’t walk far.

I felt confident I would be okay since I was hiking, Nordic walking, electric biking and doing rowing machine and other ‘gym’ type stuff. As I said, I felt better for it.  I was trying to stay positive, but the three-month wait for cardioversion was haunting me a bit.  I kept forcing myself to do stuff as I felt worse when I sat around.

In the midst of all this chaos, day 9 of Afib, I had an NHS health check – obviously my high HR caused consternation as did the ECG they did.  The nurse summoned a senior GP and he encouraged me to contact the ULH and see if they could do a cardioversion sooner.  My Resting HR was now 98 instead of its usual 52 or so!!  During the day it is more like 110 vs 64.  I can’t really feel it during the day but at night I can feel it pounding through the mattress – very off-putting. Stairs and slopes were a real problem. 

Day 10 I went to the big teaching hospital to meet the hepatologist.  She spent ages telling me all about how HHT affects the liver (I know! I know!) and mentioning scary things like Portal hypertension (which can lead to heart failure and may require a liver transplant in extreme cases) before finally coming to the point and saying there were a whole lot of tests I could have done (A biopsy done via a central line in the neck anyone?) which I declined.  She persuaded me to have a Fibroscan and then she finally realised that my liver function had not changed since 2019.  Phew! Panic over.  It does not diffuse properly but it is not causing problems at this time.  One bit of good news, finally!

Then a glorious week in France – the forecast was for rain every single day but in fact, it was much better than that – cold and grey but some sunshine – and heavy rain only when we were heading home or sitting on the train.

We drove to the lovely Flemish city of Arras and visited the Canadian WWI memorial at Vimy Ridge – very moving.  Two days later we caught the train to Paris – I have been there before – my honeymoon way back in 1983 (we went by HOVERCRAFT!) and 1996 when we ran the Paris-Versailles 10 mile road race.  I had forgotten how BIG Paris is!  We used the Metro a lot but I still ended up walking nearly 9 miles per day on average!!  Once again, slopes are a problem and stairs a big problem.  The only thing it stopped me doing was going up the tower of Notre Dame which was a shame.  The only reason I wanted to go back to Paris was to see the restored Notre Dame cathedral but it was spoilt as there were literally thousands of people in there and you could only shuffle along like on a treadmill – it was horrible and lacked any sense of grandeur or spirituality.  Such a shame. 

What an achievement it is that the French were able to restore all that, following the fire, in just six years.  Incredible!

After five days in Paris we caught the train back to Arras where we collected our car (it was still there – hurrah!) and drove back to Calais.  Imagine my surprise to suddenly get a call from my EP while in the car.  He begun by saying he had seen my latest ECG (the one done at the GPs which I had sent him – once again the ULH does not communicate properly) and it was NOT atrial fibrillation.  I truly feared the worse – was it something that was going to advance into some sort of Ventricular Arrhythmia?  But he explained it was Atrial Flutter which is easy to treat with an ablation.  I was stunned – just two weeks before (and six months before that) he had told me that he would definitely not do any further ablations and here he was saying that he had discussed it with all his colleagues at Papworth and they all agreed it was worth a go!  Incidentally, post Minimaze it is common to require a “touch-up” ablation.

To say I was shellshocked was an understatement.  He also said they did not want me to have a cardioversion as they felt they had a better chance of making a difference if I was actually in AFL (flutter) than not.  However, he did not want me staying with such a high heartrate for a long time so this would be upgraded to “urgent” though he was not sure how long the wait for it would be!

I was in a daze – I said yes and today I confirmed it in writing.  They seem to think it is so simple to do and, just like with the Minimaze, I feel I have to take this last chance before I go down the Pace & Ablate route.  Mind you, I said that before Ablation #4 in Oct 2024; the Minimaze (Oct 25) and now this.  Likewise, I’m not confident it will work.  AND it is going to ruin a whole lot of trips we have planned (we have to take school holidays so are limited timescale-wise as to when we can go away).

Anyway, that’s my highly exciting month so far!

Still to come are a chat to my GP about the Health Check; a follow up appointment with the Professor who specialises in SCADs and then next month the gynae procedure and the liver scan.  Does it never end? No wonder the NHS is in such a state – just blame me!!

And, of course, waiting for the fifth ablation…. ARGHGHGHG!!!

However, I am still managing to do some exercise - cycling today albeit gently.  Weirdly, my HR only goes up to 120/130 when really puffing even though it is 110 at rest!