My Arrhythmia diary.

[Colin Pearson]

Thanks everyone.

Currently still in hospital which is where I'm typing this from atop my bed.

Here in the UK we quite often have open wards rather than private rooms. I much prefer the open ward as you can have a chat with the fellow inmates.

As for me , I'm in a mess with anxiety and fear but know I am in the best and safest place.

The current prognosis is that the current drug Flecainide isn't cutting anymore. They have stopped the Flec and put me on Amiodarone.......

But at this point in time, I don't care, I just want something to put a lid on the runs of VT I keep getting. Had a good session looking at the data, hundreds ad hundreds of runs of VT, a lot of self terminating VF and obviously two that didn't self terminate requiring full power 41 joule shocks.

So, I'm as edgy as an edgy thing on the edge

[Suzanne]

My opinion: Ask to speak to the Director of Arrhythmia Services at the hospital and and explain your situation. You're too young to be on amiodarone. Ask for another ablation. Just because they failed the first time doesn't mean a second wouldn't benefit you. Ask for the best person they have, who specializes in VT ablations (not the same person who did your first one).

I'm sorry for all you're going through, Colin and I sure hope things go better for you.

[Colin Pearson]

My opinion: Ask to speak to the Director of Arrhythmia Services at the hospital and and explain your situation. You're too young to be on amiodarone. Ask for another ablation. Just because they failed the first time doesn't mean a second wouldn't benefit you. Ask for the best person they have, who specializes in VT ablations (not the same person who did your first one).

I'm sorry for all you're going through, Colin and I sure hope things go better for you.

Thanks Suzanne,

Here in the UK we have no choice by who, how or where we get treated so there is nothing I can do other than tough out getting liver, thyroid rot and turning blue.

[Poppy]

Colin, I think you are very brave considering how many shocks you have had. You seem very clued up on what your device can do.

Like you, I live in the UK. Mother of a grown up daughter and a part time social research interviewer which involves a lot of walking. I have a Boston ICD, but what particular number it is, I haven't a clue.

I am very aware that my condition is mild compared with some of the people who post on here. It was just a nasty surprise when I went into VT last year.

Anyway, very best wishes to you, and here is sincere hope that you have no more shocks !

Poppy.

[researcher09]

fyi. In my prior review of VT ablation expertise, there was an absence of participation of UK centers in international VT ablation trials suggesting that there was probably a lack of extensive experience in the UK for VT ablation. I looked again to see if there are more details. Although the focus of the arrhythmia society in the UK is still on AF, I found a limited listing of experts that are offering their experience in presentations to colleagues in the UK. The listing is here - (almost all London based)

https://www.rsm.ac.uk/events/events-lis ... ardia.aspx

If I further screen for the extremely difficult cases where epicardial ablation is required in addition to endocardial ablation, then I found one group at the Imperial College. Use "epicardial ablation ventricular tachycardia UK" in search to find 9/2016 paper. Only a handful of those procedures are done at each of the top centers in the world so that is a good screen to use to find the cream of crop VT ablation experts. We found on the AF forum that UK patients do have some control over where they get ablated especially for the most difficult cases. Hopefully, you can impose some logic on your treating physicians to help you get to the right place.

Best wishes for you to get well.

[Colin Pearson]

fyi. In my prior review of VT ablation expertise, there was an absence of participation of UK centers in international VT ablation trials suggesting that there was probably a lack of extensive experience in the UK for VT ablation. I looked again to see if there are more details. Although the focus of the arrhythmia society in the UK is still on AF, I found a limited listing of experts that are offering their experience in presentations to colleagues in the UK. The listing is here - (almost all London based)

https://www.rsm.ac.uk/events/events-lis ... ardia.aspx

If I further screen for the extremely difficult cases where epicardial ablation is required in addition to endocardial ablation, then I found one group at the Imperial College. Use "epicardial ablation ventricular tachycardia UK" in search to find 9/2016 paper. Only a handful of those procedures are done at each of the top centers in the world so that is a good screen to use to find the cream of crop VT ablation experts. We found on the AF forum that UK patients do have some control over where they get ablated especially for the most difficult cases. Hopefully, you can impose some logic on your treating physicians to help you get to the right place.

Best wishes for you to get well.

Interesting stuff.

But we don't get to chose unless we go private which is very very expensive here.

[Paulied]

Hi Colin - Ask your doctor or look into on your own (lots of good info available on the web) a procedure called Sympathectomy; specifically, a Bilateral cardiac sympathetic denervation. This procedure is becoming more and more recognized here in the US as a viable option when meds and ablations are not working.

The sympathetic never is responsible for lots of stuff particularly when your body goes into “fight or flight” mode. Historically the docs would use meds to suppress the signals from the sympathetic nerve. This procedure literally cuts off the pathway the bad impulses travel ultimately causing your hearts electronics to go wild.

Good luck.

[mykidsmom]

awww colin im so sorry to read this.....I hope by now things are under control for you and your feeling a ton better and maybe even heading home.....Ive had a couple of doses of Amiodarone in the past couple of years......they dont leave me on it for very long though...just until they get things under control.....I know this is a pretty scary drug but it works.....i dont remember having any side effects from it....so hopefully it might be just short term for you and they've found some other method of dealing with your issue....all the best love.....x0x0x

[researcher09]

Colin, I posted your dilemma on the afibbers.org patient blog where there are a number of UK members and asked for their experience in getting an expert ablationist referral when local skills are not at the skill level required. It appears that there is some flexibility in the NHS if you do some work and detail the reasons that you want a referral. In this case, it was for AF ablation which is less demanding than what you require, although the center talked about, St Barts, coincides with where you can find the most VT ablation experience in London. The other EP often mentioned as being the most highly skilled in the UK is Dr. Ernst and I would prefer the latter in your case as that center has the technology to lower complications (by a lot) for complex VT ablations.

Below is the link to the exchange.

http://www.afibbers.org/forum/read.php?9,157277

PS. update on my FIL. He tripped on his and cracked 3 ribs so back at Stanford. While on IV pain killer, noticed PVCs galore so he is stuck with Tylenol pills. Heart work up looks pretty good. Feisty and hungry old man so I expect recovery from this too.

[Suzanne]

Colin, I posted your dilemma on the afibbers.org patient blog where there are a number of UK members and asked for their experience in getting an expert ablationist referral when local skills are not at the skill level required. It appears that there is some flexibility in the NHS if you do some work and detail the reasons that you want a referral. In this case, it was for AF ablation which is less demanding than what you require, although the center talked about, St Barts, coincides with where you can find the most VT ablation experience in London. The other EP often mentioned as being the most highly skilled in the UK is Dr. Ernst and I would prefer the latter in your case as that center has the technology to lower complications (by a lot) for complex VT ablations..

^ Good and helpful info!

[Colin Pearson]

A quick update...

Since coming home from hospital in very early May having gone onto the Amiodarone in hosptial I've made it through summer without turning blue.

I've also not heard a dickybird from the hospital at all in nearly five months!!! ... except....

Some quack phoned up and asked as I was a special and rare case if they could write up and publish an article in the medical journals, the cheeky twats. If I were so special they should look after me a bit better, I told them no it'll require further discussion, they have not phoned back.

Otherwise, I feel absolutely horrible but do have a checkup on the 21st.

I have cycled 943 miles since early May, which I think isn't a bad effort.

[freckles1880]

Way to go Colin. Keep biking and stay well. Who needs those interviews.

[Colin Pearson]

Way to go Colin. Keep biking and stay well. Who needs those interviews.

Thanks Bob.

[Colin Pearson]

There is no point having a diary if you don't update it now and then.

But first a quick recap on this years adventures;

Late April, x2 VF arrests and the subsequent dropping dead then x2 full fat 41 joule shocks brought me back to life again, which was nice.

In hospital for a few days between late April and early May whilst they started me on Amiodarone. They kept my beta dose at the same elephant tranquilising level though.

Since early May, I have mostly been terrified about what the Amiodarone is doing to me. I've currently got to get myself to my local hospital where they'll take blood and have things tested to see if the Amio is actually slowly killing me.

A month ago off to see the consultant who asked lots of questions and read the ICD, no activity recorded at all, the Amio is earning its living it seems.

Today, another trip to the pacing clinic for the usual tests; battery is showing 8.5 years remaining which is good despite the ICD whacking me five times since mid 2013. And best of all NO recorded activity.

But....

The pacing tests, they really got me today and almost had me running for the door. The sensation is exactly the same as it is immediately preceding a run of VT and then a VF arrest so my nervous system not knowing the difference went into meltdown with nothing I could do about it.

I don't know about everyone else but they really whack up the speed, I was sat at 62bpm and then they pressed the button and it was at 90bpm, bloody horrible and had me nearly off the big seat and looking for the door.

The next test, my favourite, not, is the one where if you have two leads is where they make your heart beat upside and back to front. After a negotiation where I said, "Nope, you are not doing that test" and they came back saying they had to and then me saying "Just do it, do it, do it as quickly as possible", they did and my nervous sytem went into meltdown.

These tests although unpleasant have not really "got" me before but after today I'll be fearful of next time. But time I shall pop a chill-pill before going!

Driving, the forms are being filled in and signed off and soon i'll possibly be allowed to drive again, the thing is I'm sure I want to. I had my initial SCA whilst behind the wheel and quite frankly driving scares the hell out of me now. And that is from me previously being a very confident high mileage driver. This time after this third six month ban, I'm just not sure.

I'll update further when I get the bloodtest and results of what the Amio is or isn't doing.

[mykidsmom]

good luck collin...hope you get some good news...