4 ICD’s and a dodgy valve

Guest Post by Mark W

I woke up in a hospital bed in the CCU ward of the Royal Free Hospital on 22nd December, 1994. My wife, Adele, was sitting beside my bed and I asked her what was happening and where was I?

I had arrived at my office the previous morning to collect some files, and had just stepped outside the door onto the pavement when I collapsed, unconscious, on the pavement. My employer saw me lying there and told one of the staff to dial 999. I wasn’t moving or breathing and was just lying there on my back, going grey. While waiting for the ambulance to arrive, he knew he couldn’t just watch me die and, having seen CPR being administered once before, he decided to have a go at it with me.

A paramedic on a motorcycle arrived in about 8 minutes and, luckily for me, he had an AED with him. He began prepping me for a defibrillation procedure when a 2nd LAS unit arrived with two more paramedics. It took them about 30 minutes to get something resembling a stable output from my heart. On the ride to the hospital, I arrested 3 more times, receiving defibrillation each time.

Once in the resuscitation unit, I was stabilised and my wife and daughter arrived to see me lying there, covered in foil insulation and with all conceivable wiring and machines hooked up to me.

My daughter told me later that the 1st paramedic was waiting outside Resus in a very nervous state as he had only qualified 6 months earlier and I was his first SCA to survive. I was sedated and kept unconscious for a further 24 hours.

Once I awoke the next day, the cardiology team confirmed I had arrested but couldn’t say exactly why. They did tell us that I could not be discharged until an ICD was implanted. My wife arranged a transfer to St. Bartholomews in London where I was cared for by a specialist arrhythmia team. I had recovered all my senses except for short term memory and was feeling quite strong and well for another month and my ICD was implanted in late January, 1995.

I left the hospital within a week and continued my recovery at home. Not a lot of information about life with a defibrillator was available in those days. We just got on with things. I lost my driving licence and was unable to find work until the following April.

In the meantime, I almost arrested once in my sleep and then, in March, I arrested at home in front of my 8 year old son. The ICD paced me and I regained consciousness but was still in fibrillation. Then, the ICD went off with a full defib shock and restored my heartbeat.

The ICD went off twice more that year but I wasn’t in Ventricular Fibrillation. The doctors fine tuned the ICD and prescribed a beta blocker for me and everything went back to as near normal as possible under the circumstances. I endured another cardiac arrest whilst asleep at home in January 1999 and was saved by my ICD giving off another life saving shock.

No further arrests have happened since and I am now on my 4th ICD. The eventual diagnosis of my arrests suggested that my prolapse mitral valve, which I was born with was at fault and I received an artificial mitral valve via open heart surgery in December, 2003. I continue to live a fairly normal life, taking only two drugs for life; Sotalol Hcl (beta blocker) and Warfarin because of having a carbon fibre mitral valve in my heart.

I have an excellent prognosis so far. My initial arrest occurred at age 46 and I will be 70 next February. I am currently an outpatient at Harefield and have a
Boston Scientific ICD (my 4th) and a bedside monitor now. It does an automatic upload and transmission to Harefield every three months and I have an annual appointment there for the pacing clinic, my cardiologist and an echocardiogram, as well. I have no serious issues regarding this exciting medical story. I got my driving license back just over 2 years after the initial arrest and have been flying all over the USA and Europe ever since. I’ve lived to see two of my children get married and there are now 3 grandchildren that I might never have seen.

A few technical points to add:

My 1st ICD was implanted in January, 1995  It was a Ventritex (acquired by St Jude in 1996) unit and weighed over one pound. It was inserted into my abdomen below the left side of my ribcage. The sensing/pacing leads ran up under the skin over my ribcage, up to my collarbone and then entered an artery to go down into my heart. It took me about 6 weeks to begin sleeping properly because of the bulge over my intestines. I did get used to it, and, although I couldn’t ignore it altogether, it did get more comfortable. That unit went off 4 times, twice saving me from SCAs and twice inappropriately, knocking me off my feet whilst fully conscious. It was replaced due to battery getting weak in March, 1999.

The second one was a Medtronic unit about the same size/weight as the first and was also inserted into my abdomen in the original pocket. That one never had to go off and its battery began to go downhill in 2008, just before my daughter’s wedding in August. This surgery was done at Harefield and while discussing the procedure with my cardiologist, he realised he had forgotten where mine was. When I reminded him it was my abdomen, he laughed and said things had moved on since 1999.

The new one would be implanted in a pocket behind my left pectoral muscle; it was that much smaller! That was done in late July, 2008. and that was also a Medtronic unit.

Finally. ICD #4 was done in September, 2015 and one of my leads was failing, so a new lead went in, as well. This unit is a Boston Scientific, accompanied by a new bedside monitor. It’s about the size of that cigarette lighter (a Zippo I’ve had since my Air Force days).

ICD, Zippo Lighter, one pound coin

So, that’s 23 years’ worth of ICD technological progress. This new one is invisible behind the chest muscle. I’m the only one who knows exactly where it is. The only negative side of all this is that they left #2 in my abdomen because they weren’t going to subject me to 2 procedures back in 2008. So, they just switched it off and it sits happily and quietly in my guts. Again, I’m only aware of it because I know exactly where it is! Apart from the relatively unnoticeable scars from all the incisions, I don’t look like I’ve had all this surgery done on me.

To finish, finally, my dodgy mitral valve began giving up on me in 2003, and I underwent open heart surgery in December of that year and received a carbon fibre mitral valve to replace my failing one. That’s now only evident by the fading vertical scar over my sternum (breastbone).

Let’s be real careful out there!

Dare to dream

Main text originally posted into the Facebook Group November 2015, epilogue June 2016 and republished with permission

Little did I think as I lay in hospital post SCA that one day I would be sitting here today in this place writing this post.

At 4am in June 2013 I suffered an SCA whilst sleeping, my partner Dawn awoke up by sheer chance to find me face down in the pillow bathed in sweat, but quite dead, ironically the very day we were due to fly to Spain for a tennis holiday.

She turned me over onto my back and phoned an ambulance before commencing CPR.  The ambulance arrived 8 minutes later and worked on me for a further 20 minutes before my heart started and I remained unconscious in an induced coma for the following 7 days in the hospital Intensive Care Unit followed by a further two months in hospital.

When the Doctors allowed me to re-gain counciousness I was riddled with Myoclonus (involuntary muscle jerking) so I could not co-ordinate my legs, arms fingers indeed the jerking was so bad I could not hold any utensils to feed myself, walk or do anything without an involuntary spasm which was so violent on one occasion it threw me out of bed.

I was moved from Intensive Care to first a cardiac ward and then to a neurological rehab ward.  I was still bed ridden and placed in a ward with accute stroke victims who could do nothing for themselves, I was so affected by this that to this day I take prophylactic aspirin to reduce the likelihood of a severe stroke.

This did nothing for my psychological well being as I realised that this was exactly how the medical staff saw me, with the same level of dependency and likely outcome and thus my thoughts were that I was destined to live out the rest of my life stuck in a bed, being looked after and observing real life through a distant window.

In fact I distinctly remember laying in that white sterile bed under those aeseptic fluorescent strip lights listening to my fellow patients groaning in pain noting the monotonous boring tick tock activities of the daily hospital processes and crying to myself in abject self pity thinking this was my life from now on.

Oh how I longed to once again feel the small things in life like the rain on my face, the warming sun and hear the rustle of the wind in the trees, the chatter of excitable small children with huge enthusiasms for what was to come and the birds twittering as they went about their daily business.

I simply wanted more than anything to live a normal life and experience normal things with normal healthy people, but as it was I couldn’t walk, speak sensibly or even demonstrate acceptable behaviours because during my SCA I had sustained hypoxic brain injury which had affected all of these things, and now it was me that was not normal nor healthy.

I remember the feeling of being observed, spoken and tended to as if I was a little boy with no will of my own or the capacity to determine what I wanted or didn’t want.

I thought that if I couldn’t have a normal life with dignity, doing normal things, I didn’t want a life at all and I would end it.  But before I did that I had to stop listening to people telling me what I could and could not do and find out for myself what would be achievable and then re-evaluate whether life was worth living or not.

I asked a kind but bewildered visitor to find me a Zimmer frame and I got out of bed and tried to walk to the toilet so for once I could pee into a toilet and not a bottle because I wanted the dignity of urinating in a toilet like normal people do. Unfortunately for me my legs gave way and I fell and did some muscle damage, the medical staff picked me up and put me back in bed and chastised me for all the form filling they would have to do. The following day I tried again and fell again and then they then put alarms on my bed and put the cot sides up, stole my Zimmer and offered me drugs to keep me quiet.  This was a dangerous cross roads for me, a choice to give up and succumb to a drug hazed half life or carry on being a nightmare patient until I couldn’t.
So I made up my mind and disconnected the bed alarms, refused the drugs and then much later managed to acquire a wheel chair meant for pushing patients in, the ones with the little wheels.  But I discovered that if I lifted up the foot plates I could scoot along using my feet. I did bump a few things though and was told off by the ward nurses. But this wily and experienced senior ward sister gave me permission because she thought it would exercise my legs and I would scoot around with a lofty look of contempt for the nurses who had tried to have me banned.

In my wheel chair I eventually got myself outside and used to go and sit under a huge sprawling evergreen tree where I would talk to it like it was my totem or something while I watched the world go by.  I loved that tree, and still do in fact……….. it was my friend, listened to my many complaints and never criticised anything I said or did. During many subsequent hospital visits I always make a point of going to say hello to that tree and giving it a tender pat like an enduring, good, faithful and understanding friend.

i think if you have read this far you might be a little bored by now so I will synthesise the subsequent story as best as I can.

The Myoclonus gradually subsided although never completely disappeared, and both walking out and at home I have collapsed many times causing both bruising and cuts. No one seems to know why I collapse but dehydration, electrolytes and tiredness may have played a part, and I am much more careful about managing this now.  Fear of collapsing in public often prevented me from doing things but with Dawns support together with the book Freedom from Fear helped me to largely challenge that negative line of thought.

I have as a point of fact been a keen sailor most of my adult life and enjoy the beauty of the ocean and so to consider that as doddery as I was that one day I could ever sail the oceans again was slightly more than I could have dared.

Or was it ?

With Dawns support or maybe her desire for an easier life I set about planning to go off sailing and knew that in order to be able to do it I had to achieve certain objectives.

Sold a house, folded my business, got fitter and braver, adapted my expectations and then found a catamaran that I liked but the only problem was it was located on the other side of the world from England. Indeed it couldn’t be any further because it was in New Caledonia near Australia which of course involved very long flights with brief stop overs and as I detest airports and flying this could be a problem.  If I am honest I probably have some sort of phobia for airports.

Well it proved not to be a problem and I am currently sitting here on my new boat writing this post having sailed 800 miles from New Caledonia to Australia with my long suffering partner Dawn.

The trip wasn’t without issue, 400 miles from land I developed dreadful arrhythmia’s which made me feel quite unwell for a day. In the end I got rid of them by jogging on the spot for 250 steps just to bump my heart back into rhythm but this is not a strategy that I would recommend……………….it was just undertaken in desperation and it worked for me on that occasion.  Yes it frightened me at the time, it frightened Dawn as well but I had to know if I could do it and as I sit here writing this I am clearly not yet dead.

I will go and do a download of my ICD and book to see my cardiologist to see if anything shows up and obtain some advice from him which I am hoping will be constructive.

I suppose what I am trying to say is that having an SCA isn’t the end of a good life.  If you are new and reading this you may feel that this is the case……………….. but it isn’t !

We all know life is a risky business and maybe more so now but please don’t let the Nay Sayers convince you that you are better off or safer by not doing something that you think you might like to do………….. have a go……………. the worst thing that can happen is that you die trying and what an admirable epitaph that would be.

Healthy people also die trying.

I think it’s important to each of us to try and achieve something for ourselves each day.  Doesn’t have to be a big thing just do something, because doing something adds value to your own well being whether that is climbing mount Everest or growing beans in the garden.

Sometimes if you are feeling suicidal growing beans in the garden can be a personal Everest so doing it is much more than simply planting beans……… The one thing that I hear a lot on this site is people being told that they can’t do this or they shouldn’t do that.  I am not sure that not doing something makes you live longer or it just seems like it ?

Many people get old and die regretting the things they didn’t do in life and as we all have dreams and aspirations why do we allow other people to tell us not to do the things that we would like to ?

You have to have hope and you have to strive to achieve your dreams so when someone who is supposed to know better tells you that you shouldn’t or you can’t it’s because it doesn’t matter to them……………. it’s not their dream is it ?

Do you have a dream?

Epilogue

It’s now a full three years since my SCA so tomorrow it’s sort of a third birthday or third year celebration and I thought I would do an update to the above.

I did see a couple of cardiologists both of whom were supportive of my plans, although one flatly told me that if I got palpitations again I should take another beta blocker rather than jogging on the spot………. but I will probably ignore that and jog on the spot again.  Having returned to the UK we sold, donated or dumped pretty well everything we owned.  Filled in reams and reams of paper about this and that.  Dawn managed to get us a great deal on health insurance cover and armed with 12 month visa’s we flew back to Australia on the 15th April 2016.

Since then we have done a lot of work on the boat and are now nearing the end of a huge 3 month planned refit.

Early July the two of us plan to set off to sail the 500 miles to the Australian Whitsunday Islands for 3 or 4 months cruising around the Islands of the Great Barrier Reef.

After that……..well who knows ?

In truth I am still lacking all the co-ordination that I had pre SCA………still a bit doddery on my feet……..still a bit tired all the time……….and still very pig headed 

So that’s my story of my last three years since my SCA and now we are going to go out for dinner to celebrate because we can 

Thank you Dawn for performing good CPR…….. for my life, for loving me no matter what and for supporting me in all my endeavours…………… and thank you the reader for taking the time to read my story.

Stubborn old git, one year later

Guest post by Keith Lord

Well the last time I left a note was a couple of months after my SCA in September 2016. By November I had also suffered a pulmonary embolism caused in part, the doctors thought, by the implanting of my ICD.  So after another stay in the emergency unit I was put onto a blood thinner, Rivaroxiban and sent home when all seemed well.

A week later I was feeling good and got up in the morning and went for the obligatory emptying of the bladder and low and behold I nearly had another SCA when I pee’d blood instead of the usual, so much that I thought I would faint. Called the wife who called NHS who booked us an appointment for the next day in the hospital.

We had to get a cab to the hospital and went to ambulatory care ward, one look at the sample we had taken with us and was told “you are not going home!!” So another ten days being prodded poked and cameras inserted where men really dont want them inserted (my bladder was very clean on the inside), I even won a bet with the senior urologist when I insisted that their was nothing wrong with my waterworks and why didn’t he talk to my cardiologist about the blood thinners.  So, after him paying his debt to me (which I donated to the ward) I caused no end of fuss being a stubborn old man and insisted I be transferred back to cardiology.

Back on cardiology and all went well and dosage of blood thinner reduced and home I went. Was seen by the cardiac nurses who said, well you certainly know how to keep us on our toes and again I told them that I was not going to give in or up. A week later I found myself with breathing problems, initially I put it down to having maybe twisted a couple of the mending broken ribs. I looked at myself in the bathroom mirror and noticed I had white nipples!!! So, call the wife, who called the cardiac nurse who was there within the hour who listened to my chest and said – I think you have pneumonia !!  So another blue light trip, because by this time I really could not breathe without any oxygen mask. At A&E there was much joking about  “your usual bed sir?” and “did you pre-book for this weeks stay?” etc. Anyway, guess who had picked up a hospital acquired viral infection which then led to the pneumonia and plueresy. Eventually I was released from hospital on December 10th.


Four life threatening occurrences later and the cardiac team were calling me Mr Miracle, in their experience no-one had been able to survive so much post SCA and still be smiling. Well, to say I took it all in my stride would be boasting and a lie, but here I am one year later and now in 18 days, I, my wife and family (who by now all have a small amount of PTSD)  pick up the keys for our adapted dormer bungalow near the sea. It’s been a tough year, perhaps more so for my wife, son and daughter, but we have got through it. There have been some very down moments and some great laughs, we have wonderful friends who have supported us. The damage to my heart is severe, left ventricle only works at 15% so getting enough oxygen to my brain means sitting down most of the time. But I have my driving licence back and a whole new area to discover at our new location on Anglesey, I was lucky to only suffer minimal recent memory loss so although I might forget what I ate yesterday I still have all my pre SCA memories. You will get down and fed up and it can be very hard, but try for humour and being aware that there is another go at life.  If you can be positive about what has happened.

It’s a wonderful life for a stubborn old git !!