IMPLANTED CARDIOVERTER DEFIBRILLATORS.

rickangus
Posts: 230
Joined: 13 Jan 2007, 10:17pm

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby rickangus » 27 Aug 2015, 3:54pm

Right then, it's been while since I promised to write but a lot has happened in the meantime. I was planning to outline those experiences from end of last year to beginning of this but my mind was addled and I was struggling to recall things in the correct chronological order.

But then one day in May at 4.00 am the phone rang. It was Papworth Hospital saying a suitable heart had become available and an ambulance was on its way to collect me. Now, after two years without a pulse (having had a VAD heart pump), 35 blood transfusions and huge bucket loads of pain I have an almost perfectly functioning heart! And not only that but I've got rid of the hateful ICD, the VAD. amioderone and warfarin. Mind you I'm still taking 44 tablets a day though should decrease in due course.

There were a number of problems after the transplant and I only returned home two weeks ago. I'm still very weak but hope to strengthen up and, of course, get back onto my bike once my sternum has fused. Apparently the shock waves of hitting a bump when one's sternum Is in two pieces is excruciating.

So, apologies for the delay in responding but I'm now off to sign up to the Strava site.

Vorpal
Moderator
Posts: 15404
Joined: 19 Jan 2009, 3:34pm
Location: Not there ;)

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Vorpal » 27 Aug 2015, 3:59pm

:D :D :D :D :D :D
I'm happy to hear from you & such good news!
“In some ways, it is easier to be a dissident, for then one is without responsibility.”
― Nelson Mandela, Long Walk to Freedom

Colin_P
Posts: 144
Joined: 19 Aug 2013, 2:21am

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 27 Aug 2015, 4:08pm

Rick !

Fantastic news and I'm (we are) very pleased to hear from you.

I don't really know what else to say, probably best not to dwell too much on the past.

Looking to the future and picking up on your comment about strava, I know a lot of people scoff at it but I think it is really rather good.
Last edited by Colin_P on 30 Mar 2016, 5:27pm, edited 1 time in total.

Colin_P
Posts: 144
Joined: 19 Aug 2013, 2:21am

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 30 Mar 2016, 5:27pm

Rick ?

Any news, updates on how you are?

I hope you are well.

rickangus
Posts: 230
Joined: 13 Jan 2007, 10:17pm

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby rickangus » 1 Apr 2016, 10:59pm

Hi Colin,

Great to hear from you again and it's very kind of you to inquire...

I'm doing ok thank you. From a medical/post op perspective things are pretty good. It'll be a year in May since the transplant and I've had no rejection episodes to date. I've had an infection which came with the new heart but that is now under control. (Note; the medical team are concerned about rejections and infections as the treatment of one can jeopardise the other e.g. if I have a rejection they will increase the immunology-suppressants which, although protecting against organ rejection, increases the risk of an infection.)

Recovery wise, things are a bit slow. I think there are two reasons. First is because I was so inactive from end of 2012 that my muscles were wasted and are taking time to rebuild. The second is that some of the immune-suppressant drugs and the drugs for for the infection treatment are known to create muscle weakness and fatigue. However, I try to go to the gym twice a week under a recuperation scheme and I believe that is helping. Any day now I'm going to get on my bike and see if I can do more than I did late last year. I do hope that will be the case.

Any which way, that's enough about me - how are you? How is your ICD treating you? Even though mine has gone - and I'm still mighty pleased about that - I continue to have what is almost a panic attack when I'm in Papworth and hear other patients' monitors alarming, signalling an imminent shock. I can't seem to convince my mind that I won't be on the receiving end.

I do hope that you're not being knocked too much around by yours. I'm in awe of your philosophic approach to such experiences :)

Cheers

Colin_P
Posts: 144
Joined: 19 Aug 2013, 2:21am

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 27 Apr 2017, 2:19pm

Apologies for not responding Rick, I hope you are well and thriving !

Me, not so, I suffered two VF arrests on Tuesday from which the ICD shocked me back to life from.

Currently in hospital from where I write this and not feeling very well :?

rickangus
Posts: 230
Joined: 13 Jan 2007, 10:17pm

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby rickangus » 27 Apr 2017, 2:41pm

Hi Colin,

I'd like to say it's good to hear from you, and it is, but not under these circumstances. I'm very sorry to hear what you've been through but, otoh, am more pleased that your ICD has pulled you through.

Given your history of shocks I'm guessing your battery might be running a bit low by now - are they talking about replacing it?

When did all this happen and how long have you been in for? Do they have a plan for you at this stage?

You can always pm me if you don't want to publicise details.

Thinking and praying for you at this time,

Very, very best,

Rick

rickangus
Posts: 230
Joined: 13 Jan 2007, 10:17pm

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby rickangus » 27 Apr 2017, 2:43pm

Oh and btw I'm doing ok thanks, still not as fit or strong as I'd like to be but still the right side of the turf as the Irish would say.

Colin_P
Posts: 144
Joined: 19 Aug 2013, 2:21am

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 28 Apr 2017, 8:33am

Thanks Rik,

Currently they have me on Amiodarone which is the long term fix.

I'm not too happy about it knowing the side effects but they cannot abalate the source of VT and the VF arrests.

At least I'm still here to moan about it !
Last edited by Colin_P on 28 Apr 2017, 8:59pm, edited 1 time in total.

Vorpal
Moderator
Posts: 15404
Joined: 19 Jan 2009, 3:34pm
Location: Not there ;)

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Vorpal » 28 Apr 2017, 8:55am

Sorry to hear about you problems, Colin, but thanks for posting. Rick, thanks for the update. I'm always glad to hear from the contributors to this thread.

I sincerely wish you well.
“In some ways, it is easier to be a dissident, for then one is without responsibility.”
― Nelson Mandela, Long Walk to Freedom

Colin_P
Posts: 144
Joined: 19 Aug 2013, 2:21am

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 28 Apr 2017, 3:08pm

Thanks Vorpal,

I'm home now, a bit nervous and fragile but home all the same.

Two, what would have been certain death cardiac arrests a few days ago and home a few days after thanks to the ICD.

I'm currently still on / in the loading dose phase for the amio, so it'll be week or two until it takes effect, just hope everything is quiet in that time.

rickangus
Posts: 230
Joined: 13 Jan 2007, 10:17pm

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby rickangus » 29 Apr 2017, 10:59am

Welcome home Colin!

Being home is nearly always better than being in hospital and getting there so quickly after your experience is, I guess, a good sign. Nevertheless I can well understand your feelings right now.

Amioderone is good at doing what it is intended to do as, indeed, is your ICD.

I do hope things calm down and the experience hasn't fazed you too much.

All the very best.

Colin_P
Posts: 144
Joined: 19 Aug 2013, 2:21am

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 29 Apr 2017, 4:39pm

Thanks Rik,

Strangely this time I'm not quite as het up about it as previous events.

It is curious actually, I'm feeling quite calm, a lot calmer than for a very long time. Thinking, you do a lot at times like these; I was on Flecainide for two and a bit years one of the major side effects listed of it is anxiety and depression. I stopped taking it four days ago when they put me on the amio and my mood and general feeling of wellness has massively increased, despite having dropped dead twice this week!

I've also been on the bike, all be it only for about five minutes and at 3mph in the crawliest crawler gear, that made me feel really good and was something I thought a lot about doing whilst in hospital, you know, one of those things that just sticks a defiant two fingers up at the illness.

I'm determined not to let this beat me in terms of being a virtual recluse afraid to do anything. I've bounced back before and will again but may have to adjust my expectations a little for this year.

Talking of which, throughout all of this (over the last four years or so) I have tried to be out on the bike as much as possible. I know I'll never break any time, speed or distance records but don't do too bad all things considered. At least I'm out there doing it, all be it slowly!

I joined strava in August 2014 and take great interest in comparing my efforts and looking at my data, no point comparing to others... but down the hills I'm not too bad, but....

2014 = 800'ish miles in the last four months
2015 = 2100'ish miles in the full year, I'm very proud of that effort.
2016 = 1600'ish miles in the full year
2017 = tad under 500 miles so far with a target of 1,500 which I think I'm going to adjust down to 1,000 but we'll see how we go.

The main thing to me is being out there, however slow. I even thought about an e-bike for a few moments and then thought it would be cheating.

I'm not rushing back into things and will be taking it very easy for at least a week or two :wink:

Colin_P
Posts: 144
Joined: 19 Aug 2013, 2:21am

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 15 May 2017, 12:27am

Well, it has been a few weeks since the events.

Things are mostly good, I'm out on the bike doing lowly six mile loops but am out every day.

What I'm struggling with is anxiety, especially when sat still and in bed trying to sleep. I don't know if anyone else has suffered anxiety or panic but when it gets hold you, it really does!
Last edited by Colin_P on 15 May 2017, 3:06pm, edited 1 time in total.

thirdcrank
Posts: 26703
Joined: 9 Jan 2007, 2:44pm

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby thirdcrank » 15 May 2017, 9:51am

I've been there - or a version of it - when I was diagnosed with heart disease and that's now thirteen years ago. Overnight, I turned from being a grumpy old git to being a worried and very grumpy old git. As I look back now, the thing that made the change for me was the arrival of grandchildren: I now have three. I spent yesterday morning at a football gala in which one of them was playing and in the afternoon all three generations went out for lunch. In between a did a bit of team mechanic duty on my granddaughter's Islabike. ie, too busy to dwell on things.

Everybody's different but being fed up and frightened when there are problems with the ticker isn't unusual. Best wishes with coming to terms with it all.