My Arrhythmia diary.

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Colin Pearson
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Re: My Arrhythmia diary.

Post by Colin Pearson » February 16th, 2018, 4:01 pm

And another update.

October 2017 is when I should have had the first set of bloods "lets see what the amiodarone is doing" done. I didn't bother.

Ending the year my cycling mileage total was a touch over 2,100 miles which I thought was a reasonable effort and equaled my previous best year total in 2015, a year in which I didn't drop dead. So 2017 was quite good having croaked twice.

I did eventually go for a blood test about a month ago and it seems the amiodarone may be doing something to my liver. I've been refered to another quack who deals with such things but the appointment isn't until May! Oh well.

The good news though is this week I went for my latest ICD check and the device hadn't recorded a single blip, and I always make sure I see this on the screen. So it seems whilst the amiodarone maybe killing me slowly in other ways, it is stopping my heart killing me suddenly and quickly.

And better still is the battery life, which I'm not sure I believe. I'm sure we have all had cars where the fuel guage has been questionable and this is how I'm viewing this. The battery is showing 8.5 years remaining!

As some may recall, I had the ICD placed in August 2013 and in that time it has delivered the test shock at implant, some AT pacing in the first year, was used a lot during an attmepted ablation to induce VT/VF and has delivered FIVE full fat 41 joule shocks. Despite all that it is showing 8.5 years remaining.

What makes me weary of that is that at implant it only showed 10.5 years, ergo without doing anything should have 5.5 years remaining. But having done a bit of work is at 8.5 years. Either it has a dodgy fuel guage or my body is acting as a cold fusion reactor and inductive battery charger.

I don't care, i'll take the 8.5 years.

I'll further update when anything changes or I find out what is happening with my liver.

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Colin Pearson
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Re: My Arrhythmia diary.

Post by Colin Pearson » July 3rd, 2018, 2:55 pm

Another six months, another check.

The pacing check thing is really becomming a thing for me, I really totally and utterly hate that feeling. For me it feels like I'm in VF just about to hit the floor.

Battery is showing 8 years remaining now, exactly as expected from the last checkup. The ICD will have been in five years in August and with five shocks (plus the test shock) it isn't doing too badly.

What is a woory is that a few events of VT were recorded despite being on a massive dose of betas and being on Amiodarone. At the last checkup there was nothing recorded at all. This does worry me a little bit, well a lot, as I might be building up a resistance to the Amio. This happened when I was prevously on Flecainide, all good for a few years then bang.

I'm not sure what it will bring, an increased dose of Amio at some point or a swith to something else, the question is what though. I hope things remain stable and I don't have to increase the Amio, as I am feeling the sun exposure side effect quite badly and here in the UK we are having a record breaking summer. I just can't go out in it and am having to wait until close to sundown to go cycling.

Amio turns you into a vampire !

Since the last update I've also switched from working from home to train commuting into the office which is something I wouldn't have thought possible this time last year. But I'm enjoying it, most of all the return of office banter. As good a boy as he is, the dog is not good at banter. The cycling, I'm still out there every evening and am on target to do my 2,000 miles this year.

Hopefully the next six months will be uneventful, and i'll update as and when.

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Colin Pearson
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Re: My Arrhythmia diary.

Post by Colin Pearson » January 4th, 2019, 6:21 pm

Another six months, another check.

7.5 years battery remaining
No recorded events
0% pacing
Lead integrity checks all good although I never get used to the feeling of them doing the check pacing off the lower lead!

Good news all round. The ICD has been in 5.5 years now and has delivered five shocks. With the 7.5 years left that'll mean it'll have served for 13 years, quite remarkable. 2018 ended with me completing just over 2,100 miles cycling in the year. It is not all doom and gloom.

Next appointment will be to see the actual cardiologist where I very much want to discuss me continuing taking Amiodarone.

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Colin Pearson
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Re: My Arrhythmia diary.

Post by Colin Pearson » January 15th, 2019, 1:17 pm

Well, it has happened.

The Amiodarone is doing my thyroid in. Just got a call from my GP saying the bloods taken only yesterday are showing that i'm suffering hyperthyroidism. I've been summoned to the hospital for further tests later in the week.

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Colin Pearson
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Re: My Arrhythmia diary.

Post by Colin Pearson » January 24th, 2019, 7:34 am

A very sad week for me.

I lost my Dad on Tuesday. He had been suffering heart issues for sometime and declined a heart valve replacement back in 2016. Since then things slowly deteriorated. He was admitted to hospital on Saturday and went downhill fast. In the end it was a cardiac arrest that ended it, I was there and witnessed it and I know what one looks like. But I take comfort in knowing that it was quick and painless.

RIP Dad, 1933 - 2019, love you always.


Me;

I've just got back the hospital (the same hospital) having seen the cardiologist about my very overactive thyroid and now I'm waiting to see an endcronologist!

I currently feel and have been feeling worse than I have all the way through the heart issues which is not nice. I tick almost all the boxes for hyperthyroisism the worse of which are heart arrythmias, ironically the very very drug that is causing the hyperthyroisim is also protecting me from it!

I say almost all of the boxes are ticked, except one and one I really wish was ticked and that is weight loss. That is a nope! There may be time yet for that though, fingers crossed!

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TruckerRon
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Re: My Arrhythmia diary.

Post by TruckerRon » January 24th, 2019, 12:30 pm

Colin Pearson wrote:
January 24th, 2019, 7:34 am
A very sad week for me.

I lost my Dad on Tuesday.
"I grieve with thee." -- T'Pau in Amok Time
TruckerRon -- Received Minion I on 17 Sep 2009, Minion II on 26 Jan 2015

Non-ischemic cardiomyopathy
Medtronic Viva XT CRT-D
No shocks yet...
My intro is at: http://www.icdsupportgroup.org/board/vi ... 099#p57099

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Colin Pearson
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Re: My Arrhythmia diary.

Post by Colin Pearson » May 17th, 2019, 8:25 am

Another small update.

I've cut the Amiodarone dose in half and believe it or not am quite worried about any arrhythmia breaking through the chemical shield that the amio provides. I am still on a high dose of nebivolol, a beta blocker with no change to that.

Being on Amio is a strange place to be, it might stop your heart killing you quickly but at the same time you know it is probably killing you slowly!

Another quirk from the last set of bloods taken a few months ago is that my Thyroid has gone from very overactive to mildly underactive now, with no medical intervention at all. I've a sneaking suspicion that it may have been burnt out! We'll see what the current status is in a day or two when the blood test results come back from the bloods I had taken yesterday on the back of my latest visit to the cardiology department....

Yesterday I had the ICD read and the good news is that in the period since it was last checked, and like that last period, it hasn't had to do anything at all. Not one peep recorded by the ICD which is fantastic news.

The battery is also showing seven years remaining which is good. I think I always say it, but that is quite remarkable in my books. It is coming up on six years since it was implanted having provided five shocks and some AT pacing in the early days.

I'll further update when the blood thyroid tests are in and will say again that; It isn't all doom and gloom!

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mrag
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Re: My Arrhythmia diary.

Post by mrag » May 17th, 2019, 8:17 pm

Colin...you do realize your post is buried so far in the depths of the forum that only a senior and resourceful idiot would ever see it, let alone read it.

Congratulations though on your continued survival with amiodarone.
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

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