It is currently October 20th, 2017, 6:21 pm




Post new topic Reply to topic  [ 117 posts ]  Go to page Previous  1 ... 4, 5, 6, 7, 8
 My Arrhythmia diary. 
Author Message
User avatar

Joined: August 12th, 2013, 6:25 am
Posts: 852
Location: Berkshire England
Post Re: My Arrhythmia diary.
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 :zot:


April 27th, 2017, 7:36 am
Profile E-mail
Moderator
User avatar

Joined: October 1st, 2009, 8:42 pm
Posts: 3568
Location: Toronto, Ontario, Canada
Post Re: My Arrhythmia diary.
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.

_________________
~ Suzanne ~

St Jude ICD and Lead Implanted Feb.20/09
8 Shock Storm March 21/09
Lead Dislodged, so Replaced with Medtronic Lead June 16/09
ICD and Lead Explanted Nov.23/09
Medtronic Reveal XT (Cardiac Monitor) Implanted Jan.25/10...explanted and new one reinserted on July 21/11

Cardiac Monitor explanted Sept.9/14


April 27th, 2017, 2:03 pm
Profile E-mail
User avatar

Joined: August 12th, 2013, 6:25 am
Posts: 852
Location: Berkshire England
Post Re: My Arrhythmia diary.
Suzanne wrote:
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.


April 27th, 2017, 4:17 pm
Profile E-mail

Joined: July 2nd, 2016, 4:34 pm
Posts: 35
Post Re: My Arrhythmia diary.
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.


April 28th, 2017, 8:03 am
Profile E-mail

Joined: April 7th, 2016, 11:38 am
Posts: 62
Post Re: My Arrhythmia diary.
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.


April 28th, 2017, 10:47 am
Profile E-mail
User avatar

Joined: August 12th, 2013, 6:25 am
Posts: 852
Location: Berkshire England
Post Re: My Arrhythmia diary.
researcher09 wrote:
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.


April 29th, 2017, 5:11 pm
Profile E-mail

Joined: March 24th, 2012, 7:50 am
Posts: 19
Post Re: My Arrhythmia diary.
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.


May 3rd, 2017, 8:39 am
Profile E-mail

Joined: February 9th, 2012, 5:09 pm
Posts: 3035
Post Re: My Arrhythmia diary.
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

_________________
I think.....Therefore I am.!!!!!


May 5th, 2017, 6:58 am
Profile E-mail

Joined: April 7th, 2016, 11:38 am
Posts: 62
Post Re: My Arrhythmia diary.
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 walker 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.


May 12th, 2017, 12:16 pm
Profile E-mail
Moderator
User avatar

Joined: October 1st, 2009, 8:42 pm
Posts: 3568
Location: Toronto, Ontario, Canada
Post Re: My Arrhythmia diary.
researcher09 wrote:
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! :)

_________________
~ Suzanne ~

St Jude ICD and Lead Implanted Feb.20/09
8 Shock Storm March 21/09
Lead Dislodged, so Replaced with Medtronic Lead June 16/09
ICD and Lead Explanted Nov.23/09
Medtronic Reveal XT (Cardiac Monitor) Implanted Jan.25/10...explanted and new one reinserted on July 21/11

Cardiac Monitor explanted Sept.9/14


May 15th, 2017, 7:49 am
Profile E-mail
User avatar

Joined: August 12th, 2013, 6:25 am
Posts: 852
Location: Berkshire England
Post Re: My Arrhythmia diary.
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.


September 7th, 2017, 7:19 pm
Profile E-mail
Moderator
User avatar

Joined: April 18th, 2009, 7:19 pm
Posts: 8465
Location: Broomfield, Colorado
Post Re: My Arrhythmia diary.
Way to go Colin. Keep biking and stay well. Who needs those interviews.

wavhi

_________________
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 53+ years and my eldest daughter.


September 7th, 2017, 8:30 pm
Profile E-mail
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 117 posts ]  Go to page Previous  1 ... 4, 5, 6, 7, 8


Who is online

Users browsing this forum: No registered users and 2 guests


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © phpBB Group.
Designed by Vjacheslav Trushkin for Free Forums/DivisionCore.