Recovery from MiniMaze - weeks 4 and 5. A roller-coaster!

 

MINIMAZE RECOVERY – WEEKS 4 – 5 AND HINTS/INFO ON RECOVERY TOO!

Week 4

Now this week felt like progress! My blood pressure improved though it was still a bit low for me, plus I expect my thyroid was back to normal following the missed thyroxine doses (see last post)

I was also less tired and cold and sleeping better although still getting nightmares and horrible dreams.

This was the week I finally got some gumption and started doing THINGS! Nothing too exciting, mind, but just doing stuff! It’s all excruciatingly boring (apologies, this is my life!) but I wanted you to get an idea of what I was able to do after the Mini-maze…  And I didn’t do all this EVERY day – just bits and bobs!!

·         I finally started revising my German, French and Italian – one day a week each for about 1.25 – 1.5 hours.  Did the Best for Puzzles Easy Cryptic Crossword – it is advertised as “quick enough to do in your coffee break” – took my brother 18 minutes – took me three days!!

 ·         I went on the computer and wrote my blog (previous post)

 ·         I got the results of my CT head-to-hip scan in August which revealed no new or potential SCAD sites – yabba dubba doh! The detailed results had a few quirks mainly about the ‘plumbing’ of my liver but that is due to the HHT and I’d known about that for a while*. I also spoke to Haematology for the first time in over 10 years and he was able to reassure me that I do not have HHT related lung lesions after all.  Yippee! More good news!!

 ·         I made a Dundee Cake AND washed and dried up (though I was exhausted afterwards).  Two days later I cooked a meal for my husband’s birthday (I went for something easy – something I could prepare and just stick in the oven – Pollo Cacciatore (Hunters Chicken), since you ask, with roast potatoes and roast polenta.

 ·         Did some easy housework – sinks and toilets and kitchen tops etc.  Left the heavy stuff (vacuum, mopping etc for Hubby).

 ·         Walked every day since I cannot use my e-bike for four weeks (and I allowed an extra week since I was in hospital so long) – 0.50 mile, 0.28, 0.69, 0.45 hilly, 0.82! 0.28, 0.88 miles hilly!!!

·         The minus side was that my chest still hurts if I don’t do regular deep breathing exercises following the collapsing of my lung for the Minimaze.  I’m also getting humongously FAT!  And I have NO muscles!!  Though I have added some light exercise plus Sit to Stands (three times this week – one set of 15 repetitions!).

I’ve got RSI in both forearms due to too much Facebook etc swiping.  This is stopping me from knitting or playing the piano as well, which is annoying.

The worst thing was a run of fast heart rate on day 33.  It wasn’t seriously only about 5-6 beats, but enough to destabilise me and send me into a real depression and panic – what do I do if this MM has not worked? I felt I was losing hope and would be left with no energy, no life, no sport and no job….

 Week 5

I recovered my equilibrium – I usually do, but I don’t want this blog to be toxically upbeat.  There is nothing worse than going through these rough times only for a friend (or family member) to, patronisingly, tell you that there are a lot of people worse off than you – YES! I KNOW! I DON’T CARE AT THIS PRECISE MOMENT! BUT THANK YOU FOR MAKING ME FEEL COMPLETELY SELFISH ON TOP OF EVERYTHING ELSE CR*P I AM FEELING CURRENTLY”!!!!!

On Day 34 I finally walked 1.06 miles cross-country too.  I thought I had totally overdone it; my legs were so wobbly on the way back (uphill!) that I thought I would regret it.  I’ve learned that if you overdo it the body gets you back – after my first ablation when I was fighting my way back to fitness as fast as possible, I learnt that you cannot rush these things – I often ended up back on the sofa for two weeks after doing too much (I walked my first mile on day 7 after than first ablation!!).

On day 35 I did 2.5 miles on my e-bike – red setting so very easy.  It was cold and it was so easy I nearly froze – I thought my face would drop off cycling back into a northerly!!

Day 36 – walked by time rather than distance and tried to go a bit faster – I accidentally ended up doing 1.09 miles though on tarmac this time.  BUT I was also THREE MINUTES PER MILE PACE FASTER!!!!!!!!!!!!! It was so beautiful out – the fields are covered already with bright green baby wheat or barley; the sky was a deep blue, the sun was out and the few cars and vans that passed me were considerate.  Perfect.  Forced myself to rest (Duolingo! Worldle! Wordle!)

I actually feel pretty good. The week after the operation, when I was still up in Sheffield, I really regretted having this operation done – I had no idea the Minimaze would be so terrible compared to a regular catheter ablation, although three days in ICU and a collapsed lung should perhaps have been a bit of a clue.  I thought back then that if I had known there is no way I would have had it done – but then what choice did I have?

Finally, for the time being, one thing I have learnt which is really important is:

DON’T LISTEN TO YOUR BODY – IT LIES!! VERY NAUGHTY!!

MY TUPPENNY WORTH OF WHAT SORT OF RECOVERY TO DO – MAYBE SOMEONE LEARN FROM MY MISTAKES AND REMEMBER EVERYONE IS DIFFERENT.

Everyone says “listen to your body” – I profoundly disagree.  There have so many times that I have felt great and walked or cycled just a bit more and then maybe done some cooking or other exercise only to set myself back (as mentioned above) sometimes for weeks!  I have learnt to gradually increase things by just a tad EVEN IF YOU FEEL GOOD. AND don’t increase it every day.  You would not take up running with a 5-minute run and then increase it every day until you could run, say, 5 km.  No! You would increase a bit and then drop back to a lesser amount – it’d be a zig-zaggy sort of graph, but overall, the progress would go up.  That’s what you are aiming for. IMHO.

I started with 60 minutes rest and then get up every hour and walk about a bit – I aimed for 100 steps each hour.  I did get up to 200 per hour but got overly tired.  As I got better, I would DO something – like a wee bit of washing up.  As I improved further, I would do something more energetic like a bit of stretching or cooking (but note that that took me 4 weeks to get to that stage).

Now I am doing 30 minutes resting, 30 minutes ‘working’ – this ‘work’ varies – this morning it was cooking and washing up, this afternoon it has been my blog and a French revision session.  It is basically NOT ON THE SOFA! The first two weeks back home I was too exhausted to even sit at the table!!

 

Hmmmm, the FOUR days after I wrote all this I felt pretty wiped out – tired and depressed and worried about “what if” it doesn’t work.  I feel fat, spotty, unfit and old.  My usually lovely window-cleaner just shared a story about ‘someone who knows someone who knows someone who was a marathon runner and had a cardiac procedure and it went wrong and he is now on life-support’. WHY DO PEOPLE TELL YOU THIS STUFF? Are you supposed to feel grateful it is not you?! There seems to be some sort of Schadenfreude when people hear about a fit person getting ill – the cardiac nurses once said “It gives them an excuse to sit on their a*ses without feeling guilty…”!!!!!!!

So, obviously, I had, though inadvertently, completely ignored the well-meaning advice I just gave above! I did three PB (Personal Best) walks plus the little E-bike ride on four consecutive days – no wonder I was tired.  So, then I had to have two days complete rest followed by a tiny, very slow (and very cold) stroll yesterday but a slightly longer walk 0.76 today but I forced myself to go slower than I like.  Confusingly, I felt better the further I went.  WFH! No wonder I keep getting it wrong!!

Despite all my well-intentioned advice above in truth It’s so blooming difficult to know what to do – the less you do the more deconditioned (unfit) you get, BUT if you do too much you get over-fatigued and then have to have more rest and get MORE deconditioned.  I’ve still not got the hang of it after four previous ablations and the SCAD recovery.  And it depresses me every single time – I feel really JOYLESS at the moment…

On the plus side, I have a snazzy new haircut after weeks of looking like a mop head AND I didn’t have to go Christmas shopping – my husband voluntarily went off today – I loathe shopping (and to be a complete curmudgeon I hate the commercialisation and falseness of Christmas).  Bah Humbug!!

 

 

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 I just saw this on my Blog post from January 2022 – a helpful reminder to myself and maybe useful for someone to read to:

So just why does it take so long to recover from an ablation? And why does the EP say you can run after three weeks yet at my three-month review when I told the arrythmia nurse I was still ever so tired she said, in a kind way, “What do you expect – you’ve had a serious heart procedure!”.

Here are some reasons I have found out:

·        It’s a BIG procedure!

·        They do 50-75 burns inside the heart!!

·        The heart is stunned!!!

·        Deconditioning

·        Drugs

·        Ablation alters (and intends to!) the neurons and thus the function of the heart

·        Inflammation of the heart

·        Effect of anaesthetic

·        Stress

According to medcitynew.com "Radio frequency ablation takes 4-6 weeks to heal with regrowth of blood supply, rebuilding of tissue factors and prolonged inflammation"

 No wonder we feel rubbish for so long!!  My next post will look at a great study which explores people’s fatigue vs the unrealistic expectations/promises of the Eps….

 

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