8 June 2022 Real time feedback on Ablation number three...

Ablation number three recovery

1 February 2022

I’m going to write this one ‘live’ so to speak, update it every so often.

I already said that the groin insertion site was less painful.  However, I did have more trouble with constipation and heart burn which I didn’t remember having before.  But then looking back at my diary from last time I realise how fallible memory can be as it clearly stated after three weeks that I was still “getting terrible heartburn”.

I don’t think I am quite as tired, but I have been doing less around the house than before and about the same amount of physical exercise (slow walks, ebikes) as #2.  I’m sleeping well.

 

The main difference this time is how depressed I have been.  I’m not usually a person that gets depressed for more than a few hours.  But this time I have really struggled.  I’ve not been bored or upset, but just a feeling of not wanting to do anything, of everything being an effort and, well, of getting no joy from anything.

I have 11 hospital admissions in the last eleven months (8 cardioversions; ablations #2 and #3 plus an infected ear!) and I suppose it is not surprising that it has finally caught up with me.  It took a good six months to get back to 90% fitness after ablation #1 and I was only just returning to that level eight months after #2 and here we go again. 

Each time, I really believe it has worked and then each time my hopes and dreams are shattered. Add to that, that this time I didn’t really have any other good options what will happen if this one fails?  That has not been discussed really.

I was told I was too young for a pacemaker and too young for life-long amiodarone…….

27 February 2022

So I'm slowly getting stronger, but oh so slow.  I can walk over a mile but with plenty of stops.  I don't feel breathless, the heart rhythm is nice and stable, but my legs just run out of energy and I grind to a halt.  It's so frustrating.  

And there are so few benches to sit on!  So I have to sit on the floor if I need a seated rest.  The seaside is good, always loads of benches there!

I walked every day last week so thought I'd go out on my ebike with the battery power on red (full) so that it would really be a rest day but with fresh air!  But I'm so tired today.

Another big problem is the headaches.  Every single thing I do to pass the time (knitting, reading, Facebook, Wordle etc etc) means looking down and it plays my neck/shoulder/back muscles up something chronic and gives me headaches which can progress into full blown migraines.  It's too muddy to do anything in the garden which was what I was doing after #1 and #2 as they were in the spring so I need to walk or cycle to get some fresh air.  Far too cold to sit outside too like I did after the other two which were in the Spring.  It's only 3 degrees Celsius today despite the bright sun.... 

I also suffer from nausea after breakfast and after I walk. No idea what to make of that, but I had it after the other ablations too.  Very odd.

4 March 2022

Had a great day yesterday, rushed around doing stuff all day (nothing too exciting, cleaned the sinks and toilet, put washing on, etc) and went out on my Electric bike at Level Amber (medium assistance).  It was a glorious spring day and it felt like spring and the start of a new life.  I was even planning how I would alter my running training when I was fit again AND I missed my usual afternoon knap!!!

So, OBVIOUSLY, today had to come crashing around my ears.  By the time I had had a shower and breakfast I felt so totally wiped out with exhaustion that i had to sleep on the sofa for best part of an hour.  Feel a bit better, but still really exhausted.  Pride comes before a Fall.  

This happened over and over after the first ablation, but I since then I have got better at managing it, but obviously not better enough!  Oh well, rest day today. And at least the heart is okay......

 16 March 2022

Same pattern.  Good days, great days, Crash-and-burn days.  Had friends over a the weekend and managed to do a slow 1.6 miles with plenty of stops.  So naturally I spent most of the following day asleep on the sofa.  Scream!!!! 

On the plus side at least I recover after a day of rest whereas after ablation number one, when I tried much harder to regain fitness, it could take a week or two!

I'm beginning to think that it does not matter what you do, it just takes three months to feel a bit better and four months to feel a lot better.

So make that six months to feel 90% better and a year to be back to full fitness as was suggested on the Cardiac Athletes Facebook page.  Sounds about right.

I’ll update this more when I have something else to add.  Toodle-oh!

5 April 2022

I was feeling amazing this weekend.  Rode my ebike (11 miles on amber/medium setting) AND walked 1.75 miles briskly with NO stops!!!  And emptied and cleaned all the kitchen cupboards...

Uh-oh!  Paying it for it now.  Felt so weak and tired today and yesterday that I have done next to nothing.  Even sitting felt hard work, I just wanted to lie down all day.  I didn't though because then I know I shall fall asleep and not sleep at night.  Bored and cold and fed-up.  I hate all this up and down stuff.  Funny enough, doing some light exercise yesterday (stretching, few pilates type exercises) didn't seem to make me worse and if I do nothing I get a back ache and a neck ache.  Feeling full of self-pity today. 

9 May 2022

It's been a while since I posted.  Two reasons - one good, one bad - very bad.  On 7 April I decided to lie down and meditate.  I try to do 5-10 minutes of meditation a day as it is supposed to be good for Afib.  Not on this occasion... I dozed off for 5 minutes or so and woke up in Afib.  An extra dose of flecainide did nothing so it was off to see my friends at Addenbrookes Hospital A&E.  I felt bad this time - kept feeling like I would pass out which was a new symptom for me.

Addenbrookes was BUSY and so I had to wait for an hour just to be triaged.  I was struggling not to pass out some of the time.  When I was eventually called it was discovered that my HR was maxing out at 195 (a new record for me!).  I also started getting the strange sensation that boiling hot liquid was flowing though my veins each time the HR touched the 190+ level.  The doctor wanted to try bisoprolol but I told him it would be a waste of time as it had never worked before except to make me practically pass out.  Eventually, it was decided I needed DCCV number 9.  I wasn't even nervous this time!  The young second doctor was also very young and he did everything by the book.  He explained every single thing that could go wrong in detail despite me just constantly saying "Yeah, I know, I've had eight before..."!  I was duly zapped and restored to NSR.

They kept me in for two hours observation as before but could not find any food for me!  Luckily I had supplied my own water and rehydration drink!  I eventually got a cuppa tea and seven sweet biscuits.  As I was leaving I remarked to the nurse that this was the best I had ever felt after a cardioversion....

I got in the car and we began to drive home, got about five minutes outside of Cambridge and began to feel faint - very faint.  Next thing I know the car is parked, the door is wide open and my dear husband is shouting at me!  Seems I blacked out and he had to stop and call 999.  Luckily I came around before he got connected.  So we drove back to Addenbrookes with me passing out on the journey and again when I was rushed back into A&E.  I was immediately readmitted to my original place in the resus dept where I was kept overnight for observation.  It was just (just!) low blood pressure - it had dropped to 74/40!

I was moved into a side room on the main A&E area and basically left alone, though with full heart monitoring, all night.  I was just so tired.  I just curled up like a cat on the trolley-bed and slept like that with no pillow and no blanket and no food and no water except what I had with me.  Naturally, it was the first time ever I had gone to A&E without a huge bag of clothes/food/books etc.

However, I didn't care about the discomfort, I would just wake up, look around, drink more water, go back to sleep, repeat!  I know some shadowy figures did seem to prowl around me in the night so they were keeping an eye on me, but to be honest, sleep was probably the best medicine!

Discharged the next day and later told by a neighbour I saw at the car, that I had "looked dreadful"!  The day after that, with medical permission, I was a passenger on an eight hour journey to Scotland.  Not a great idea.  I was weak and whoosy and could not do as much as I wished but it was a great holiday (Bute, Kintyre, Cowal peninsular - since you ask), beautiful place, little tourism, nice people.

So since then I have been recovering mentally and physically from that trauma and continuing to get stronger.  I have now walked 4.5 miles and ridden a manual bike three miles albeit slowly.

The real terror is, of course, that it seems that ablation no.3 has not worked and the cycle of AFib-Cardioversion-Afib will start again.  I do not want another ablation because I have had three in 23 months and they only lasted, respectively, 9 months, 5 months, 3 months.....  but maybe, maybe, it was just a blip - a three month blanking period blip at exactly 2 months and four weeks!!!  Let's hope so otherwise I think it's Amiadarone for me next.....

18 May 2022

So I was tired after the jaunt to Scotland so I rested the following week. Except my rest week means no exercise and not anything else!  So I thought I would paint the kitchen.  I mean, how hard can standing on a ladder be?  Answer, blooming hard.  It was like four days of stretching and pilates and strength work rolled into one.  No wonder that by the end of the week I felt worse than at the beginning of the rest week!!!  In fact, I felt so bad that I thought I had caught my Hubby's Covid, but four tests came back negative.

So this week I'm slowly getting back into it.  Still have sore throat, but now have very sore eyes and am beginning to think I have hayfever - something I don't really get.  Took three days complete (PROPER!) rest and nearly died of boredom.

27 May 2022

So I'm back on track, feeling good, but still with the wierd dry throat.  Anyway, that's not what I want to talk about today, instead I want to tell you about my follow-up appointment with Papworth yesterday.  

I knew EXACTLY what was going to happen: Firstly, it would be a terrible line so I would miss every third word as it always is (nobody else, just them, has this problem); secondly they would say the last bout of Afib was a "blanking period blip" and thirdly I would be instructed to reduce my drugs gradually and see what happened.  I would also be offered a fourth ablation.  In response, I was going to refuse the ablation and ask to go on Amiadarone for five years to give me a chance to get my life back AND to enable me to recover fully from three ablations in 23 months AND to enable ablation technology/Afib treatment to advance a bit.

Ha!  So that was all clear in my mind.  Except none of this happened exactly as planned!

Turns out that when my Electrocardiologist studied the ECG of my last Afib bout it was not Afib but Atrial Flutter (AFL) which "just" needs a tiny, touch-up ablation in one point.  And he would book me in straight away but there was a waiting list of a few months!!!!!!!

Bl*mey!!!  I had to resist firmly the temptation to be lulled into this fourth ablation - "it would be so nice just to have it all done and dusted").  NO NO NO.  I had not recovered from #1 (plus two cardioversions and a chemical cardioversion) when I had #2 11 months later and I DEFINITELY had not at all recovered from #2 (and three more cardioversions and one natural conversion) when I had #3.  So no way am I having #4 just 9 months after that! BUT.... it was tempting.

I told the arrthymia nurse of my Five Year Plan (I sound like Stalin!) and she thought it was a good idea and was sure my EP would agree to it.  She said she would feed back my concerns.  And obviously I can change my mind about the ablation at any time. Also, of course, it will depend on how well I tolerate the Amiadarone too.  And I will need six monthly blood tests as well.

Therefore, the final outcome was the same as I had predicted (except no mention of reducing my drugs) namely that we will wait and see, just in case the last episode WAS just a blip.  I agree with this. It doesn't make sense to either have another ablation OR go on toxic amiadarone when it just may have been a blanking period thing.  However, her voice and that fact that the EP wanted to ablate suggested neither of them (nor me) believe it really WAS a blip.

So, now let's wait and see what happens.  Basically, I am now waiting for the next AFL episode to happen so we can move forward with our plan. Sigh.  Very unsettling.

Having investigated further it seems ablations for Afib often leave the patient with an Atypical Atrial Flutter.  The good news is the heart beats normally (although super fast), the bad news is that the fast HR makes you feel dreadful as I discovered.

I also read that flecainide (my drug) is either the best or the worse thing to take!

Finally, I did discuss my slow recovery and she said it was probably that I'm trying to do more than the average person, the nurse said many of them are just happy to be able to get upstairs easily!  

 

8 June

Just returned from a week in Wales - did loads of walking some of it hilly and my fitness is returning finally.  Then went down with a horrible snotty cold and bad cough.  It's not the dreaded Covid but I feel awful - mainly because I am not sleeping and I do need my 8.5 hours per night to feel good.  So the exercise is off for this week, but it gives me a rest after Wales. 

Continued on a new blog entitled "dronedarone"......