~ Thursday March 29th ~

Nothing out of place has been going on this week.  I feel like I have felt a couple of palpitations but nothing too major.  My throat feels like it's closing up that indicates a palpitation is occurring but nothing prolonged.

I'm trying to adjust the time I take my pill as I think it's too late into the evening.  Would prefer to take it first thing in the morning that way when I start riding again, the effects of the Bisoprolol will be in full swing throughout the day of any exercising, think ill have a word with my doctor and see what they say.

I'm kind off getting over the fact that I can't ride and I'm just trying to focus on other things instead.  I do think it puts me at a disadvantage though, no exercise is not good for you so how do I find that balance?  Even more questions to ask the doctor I think.

~ Monday March 26 ~

It's been little over a week now since my second shock.  It has been an un-eventfull week.  I do find it harder to get over the fear of being shocked again though.

The only thing that is eating away at me is were getting this glorious Spring weather in the UK right now and all I want to do is ride my bike and feel that breeze on my face and body.  I really hope I get the all clear to do the Brighton ride and if not...then next year but hopefully ill be allowed to ride to work again.

~ Arrhythmogenic right ventricular cardiomyopathy (ARVC) ~

~ Arrhythmogenic right ventricular cardiomyopathy ~

This is possibly the best way to explain exactly what I have.

Grabbed this data from (http://ghr.nlm.nih.gov/condition/arrhythmogenic-right-ventricular-cardiomyopathy)

What is ARVC?

Arrhythmogenic right ventricular cardiomyopathy (ARVC) is a form of heart disease that usually appears in adulthood. ARVC is a disorder of the myocardium, which is the muscular wall of the heart. This condition causes part of the myocardium to break down over time, increasing the risk of an abnormal heartbeat (arrhythmia) and sudden death.
ARVC may not cause any symptoms in its early stages. However, affected individuals may still be at risk of sudden death, especially during strenuous exercise. When symptoms occur, they most commonly include a sensation of fluttering or pounding in the chest (palpitations), light-headedness, and fainting (syncope). Over time, ARVC can also cause shortness of breath and abnormal swelling in the legs or abdomen. If the myocardium becomes severely damaged in the later stages of the disease, it can lead to heart failure.

How common is ARVC?

ARVC occurs in an estimated 1 in 1,000 to 1 in 1,250 people. This disorder may be under-diagnosed because it can be difficult to detect in people with mild or no symptoms.

What genes are related to ARVC?

ARVC can result from mutations in at least eight genes. Many of these genes are involved in the function of desmosomes, which are structures that attach heart muscle cells to one another. Desmosomes provide strength to the myocardium and play a role in signaling between neighboring cells.
Mutations in the genes responsible for ARVC often impair the normal function of desmosomes. Without normal desmosomes, cells of the myocardium detach from one another and die, particularly when the heart muscle is placed under stress (such as during vigorous exercise). These changes primarily affect the myocardium surrounding the right ventricle, one of the two lower chambers of the heart. The damaged myocardium is gradually replaced by fat and scar tissue. As this abnormal tissue builds up, the walls of the right ventricle become stretched out, preventing the heart from pumping blood effectively. These changes also disrupt the electrical signals that control the heartbeat, which can lead to arrhythmia.
Gene mutations have been found in 30 to 40 percent of people with ARVC. Mutations in a gene called PKP2 are most common. In people without an identified mutation, the cause of the disorder is unknown. Researchers are looking for additional genetic factors, particularly those involved in the function of desmosomes, that may play a role in causing ARVC.
Read more about the PKP2 gene.
See a list of genes associated with ARVC.

How do people inherit ARVC?

Up to half of all cases of ARVC appear to run in families. Most familial cases of the disease have an autosomal dominant pattern of inheritance, which means one copy of an altered gene in each cell is sufficient to cause the disorder.
Rarely, ARVC has an autosomal recessive pattern of inheritance, which means both copies of a gene in each cell have mutations. The parents of an individual with an autosomal recessive condition each carry one copy of the mutated gene, but they typically do not show signs and symptoms of the condition

~ Monday March 19th ~

...Paranoid.

This is the feeling I find myself living with now.  Two shocks in two weeks kind of puts you in this place very quickly.

Any little tinge or muscle flinch immediately puts you in a state of panic as you brace yourself and try to read all the little signs that a shock might be coming...funny thing is, there are no signs before the shock except the thought crosses your mind "hmm that feels strange" and then Boom!.

This made it hard for me to fall asleep as a result and also makes you take your time walking and doing anything that would dear deem itself exercise lol.

Anyway what can I do?

~ Friday March 16th ~

Not really much to say today.  Went to the hospital and had them check out my device readings and like I suspected...its doing exactly what it is supposed to do.  They did tweak it a little to make it a bit more reluctant to shock (just a little).

I was correct in the fact that it didn't shock me as hard as it did the first time only 31joules compared to the 41joules I got last time.

Only major change is they said I should lay off the gym and cycling for now at least until my next appointment in 3 months.  At least I don't have to give up TaiChi huh?

My right nipple hurts, same feeling I got after my last shock, weird huh lol

~ Thursday March 15th ~

.....Today at around 20:08 I had another shock from my pacemaker.

The day began as usual, up at 0630, head to the bathroom, shower and leave with the family for work.

Kiss my wife and son goodbye and take the train to work.

The morning was moderately busy but hay I work in IT so not too stressful and I'm good at handling stress.

Lunch time, mix my protein shake and headed to the gym for a light cycle session, 25mins with 5min cool down, moderate rate of 100-130bpm.

The only difference to my day is today I will be going to TaiChi in the evening. (normally a different day)

So I'm in class and were getting on with a really nice Chi Kung set (45mins) then off to the normal section of the class were we do a good 30mins of Pushing hands.

So now its just gone 2000hrs.

We finish the set and I bow to my friend Everton, and a sudden head rush comes on, just feeling light headed.  I take deep breaths to clear it and then it feels more like a palpitation is making me light headed...oh I remember this feeling, I have had many before over the years and just thought it was lack of water or food.

BOOM!!! (strangely this one is not as painful as the first, it actually felt less powerful)

.....so how do I feel right now?

I cried, I cried alot.
It's difficult when you start thinking about the things you enjoy are somehow adding to the danger of your life.
I feel like one by one things are being taken away from me.
So it looks like I can no longer ride as this is what I have been doing all week in the gym
I got to slow down period.

So know I'm back home and to keep to my promise I'm writing this entry today.

The rest of this blog might be a little boring now but I will continue to write as often as I can.  Right now I'm going to watch the rest of Episode 11, Season 2 of The Walking Dead.

~ Wednesday March 14th ~

Today I have had my first cup of coffee since before the 2nd March.  I was abstaining from drinking coffee because of the caffeine.  As you know it not only keeps you awake but increases your heart rate...a little..I could be wrong but these are my feelings and my blog to dump them :-).  I didn't notice any immediate effects other than the "perk me up" effect which I really needed today.

I have noticed one thing and it could be nothing but I have found it extremely hared waking up in the mornings I just feel so tired, now I'm not sure if this is to do with the increased dosage of Bisoprolol (now 10mg) or it could just be I'm going bed too late or age is finally catching up with me lol.  I will keep a close eye on this and let you know.  First mission tonight is "go to bed on time" then I will give you some feedback on how I woke up tomorrow.

I just got back from the Gym, I took it nice and slow, only did the bike as I thought it best to use that since I want to do the BHF bike ride to Brighton.

I didn't find it at all stressful only did 25mins and my heart rate was between 90-120bpm and for the first time I took some of those "feed your muscle" drinks (Matrix - Lean Maxx XT), this is to help me recover quickly after a work out.

You can get a tub..yes TUB lol here (http://www.supplementcentre.com/)

I plan on keeping this up daily (lucky for those who have a Gym at work).

I thought I would add details on my Bike Ride if you want to join yourselves or even donate to the cause. Check it out and see you next post.

London to Brighton Bike Ride
Jason Pratt's Just Giving Donation Page

~ Monday 12th March ~

Today I had to go to my scheduled checkup since changing my dosage from 5mg to 7.5mg of Bisoprolol.  Since the shock I had been put up to the maximum you can take on this which is now 10mg.  The immediate side effects were sleepiness, for about three days.

Anyway, the appointment.  So I had my usual ICD check, all clear no VT's since taking my new dose, so that made me happy, next the long 1hr 30min wait for the 2min ECG check and then off to see the consultant.

He went over my reports and asked how I was doing then he asked if I drive, I told him yeah the odd weekends or evenings and how I ride to work on a cycle also, not to forget I signed up to the London to Brighton BHF (British Heart Foundation) bike ride.

The bad news is:

•  I'm not allowed to drive for six months because of the shock.
• I'm not allowed to commute by cycle for three months

....."Come Onn!!!"

Any way there goes the majority of my daily lifestyle, but I can't argue it is for my own safety, and it doesn't mean I can't ride in the bike to train or in the gym, so I'll do that and tell you how I feel as I train.

Here's to the next three months before my next check up...

~ 1 Week after the Shock ~

~ My Feelings after my 1st Shock ~

Since that day I have been scared, scared of getting another shock, every little heart murmur and I'm fearing the worst.  It took a good 4 days before my chest felt comfortable again.  And on the Saturday after the shock I signed up for the London to Brighton Charity ride by the British Heart Foundation.

Doctors said I could ride, just have to keep my heart rate nice and low in the 160bpm or less range and keep those electrolytes at a good level.  I'm looking forward to it.  I'm only hoping now that 2012 will not bring on any more.

I will try to keep blogging every month to tell you how I'm going and will try to keep this up until my first battery change sometime in 2020.

Those who know me, I would prefer to keep any chit chat only on the blog, not in the mood to go over things over the phone or FB etc. :-)

~ March 2nd 2012 ~

My Mother in-law is not feeling too well so I had to take the day off work to look after my son.

I decided that I didn't want to spend the day at home so decided to take him out to the West End for the day.  We could have lunch with some friends of mine at work. Darrell could meet us and take some family photos of the two of us for his portfolio.

We were all in embankment, having lunch in All-Bar-One. Burgers were great, the little man had chips and played on Kasia's iPhone.

Then we left for Trafalgar square.  I told Darrell that it would be a nice location for a few photos and the fountain could be a nice backdrop.

So at this point the little one was getting a little tired so I told him "run, go on run around the square"  He was having so much fun I even decided to job around with him for a little.

Then we stopped and I said "ok now time for some photos" we took maybe 3-5 frames and then he said "can I run around again" "yeah sure" so I lifted him down off the side of the fountain and let him go.

....a strange tingle feeling in my chest....this don't feel like a palpitation that I have had before, this is very strange, I...

BOOM!!!

it was exactly 1511hrs

"Ahhhhhhhhhhhh SHIT!!!"

I see white,

falling to me knees, hugging my chest

OMG! I got shocked

tears in my eyes and a lump in my throat

What did it feel like? - Well it is as if your entire heart is trying to jump out of your chest but the only thing that stopped it was your ribcage.  I actually heard the Boom! sound.  My chest felt tight or days after and then tender to the touch.  The pain from the shock lasted only for the second.

My legs and arms were weak...a little disoriented. fumbling for my wallet that has my ICD patient card, oh man my chest hurts.

My friend not knowing what to do but knew what happened to me. thank god he was here with me  my son, so strong just his big eyes looking down at me.  Darrell got me to sit down while I try to get hold of the hospital.

(You see when you get 1 shock you have to call and tell them, 2 in 24hrs you call 999)

So I'm calling and the line will not connect,  Darrell gets onto his iPhone and searches for the hospital number direct.
I get hold of the operator and they give me the number

"They changed the number!!! WTF"

Finally I get through
The doctor asks how I am and since I'm just in Trafalgar Square could i make my way over for a check up.

At the hospital done my check up and the conclusion was the pacemaker did exactly what it was supposed to do. My condition was the reason, it just decided to jump up to 240bpm and so it shocked me to save me from blacking out.

Thank god for the NHS.

~ Year 2011 ~

The year came and went, mostly uneventful, no shocks form the pacemaker, I had a few palpitations that were only identified on the 6 monthly checkups.

I got used to the feeling of this device slightly protruding out of my chest.

A pretty good year to be honest.  No holidays to Egypt but good.

~ November 10th 2010 ~

I woke up hungry.  Not allowed to eat before an op.

The afternoon did not come quickly.

They wheel me into the operation prep room where they need to drug me for the op.

I Hate!! injections and it didn't help that they couldn't find my vein in my hand ("ahhhh")

They inject the "stuff" in my hand, it felt super cold.  I remember as if it was yesterday.

The coldness is going up my arm (the pain) i feel it go past my elbow, my elbow feels like its on fire.
I feel it going up my Bicep, my shoulder even my juggler vein it make me cock my head, I feel it travelling up past my ears and into my head then.....I wake up in my hospital bed...alone?...no my wife and son are their, or was it just my wife?

My first thought was "calm" "I can't feel my heart",  for the first time in 30 years my heart felt at peace.

That picture is the best way to visually explain how I felt.

~ November 2010 ~

After a long year of check-ups (ECG's became a very close friend of mine) I was finally booked into The London Heart Hospital on Westmoreland St.

The aim was to do this test where they push this wire up through your groin and into your heart to stimulate that muscle with tiny electric shocks.

How did that feel?....

The injection in the groin hurt!!

The wire going up into your heart? well no pain at all except where the doctor put it in I could feel this thing in my neck like someone pressing lightly down on it.  A quick shift later and he moved it..weird...

The process was...uncomfortable.  They bring on the palpitations separately on both sides of your heart (oh your awake during this process) and make funny faces.  I can't remember how long it took but it was a successful test to figure out what was wrong with me.

~ November 9th 2010 ~

I have been told that I need a pacemaker..I wasn't shocked for some strange reason...my reaction scared them and my family more than it did me.

The psychiatrist is drafted in to talk and explain this again to me (I guess my reaction really scared them)
It's strange how I felt I just seemed to take it in my stride.
She tells me that there are a number of things in life that needs to change:

You can't skydive (ha ha done that already)
You cant scuba dive (ha ha did that already and hate it)
You can't play competitive sports (no problem their)
Your not allowed to fly a plane (dammit!! and I was interested in talking Cesna lessons)
You can't work in a factory with large magnets (no problem their)
You can't go through metal detectors (whoo hooo!! quicker boarding time for me then huh? nope)
Those anti theft barriers in supermarkets "yeah", dont linger at those either, "ok"
Keep mobile phones away from you at about 6 inches
Not allowed to bench press or exercises that require alot of chest stretching of the muscle ("ah ok")
Don't raise your hands above your head for the first 6 weeks (that was harder than you might think, i couldn't wait for stretch, it felt so good)

That off the top of my head was all I remember from that conversation.

~ April 2010 ~

I was on holiday in Egypt with my family.

Wife
Son
Cousin
Brother and Sisters in-laws
Mother and Farther in-laws

It was a very good holiday, we did the whole touring thing, stayed at my in-laws house (there Egyptian, I'm English/Jamaican)

It wasn't until one evening while staying in a place called Ras El Bar (where the Nile meets the Sea, amazing place)

I was walking to the famous lighthouse when my palpitations occurred again, "as usual" I thought.
You see I have always had these most of my life, normally they last no longer than a few seconds
However this night it was going on for 40mins "thump! thump!" I can feel my entire chest pulsing.
Gradually I feel too weak to even walk so have to sit down and rest "thump! thump!" still while resting my heart will just not calm down.

Eventually I was convinced to not walk anymore and just wait for the other family member to go get the car and collect me.

Back at the villa in Ras El Bar and resting up in bed.  About an hour or two I wake and  feel absolutely fine and decide that I want to go for a walk (haha) after a few steps into the living room the palpitations return with a force that puts me back into a chair immediately then......water is being splashed on my face.

I can just about make out my mother in law and my wife and other family members just starring at me, talking in Arabic that I have no clue what they are saying. 

My first thought was "why are you throwing water on me?"

I had blacked out for a full 2mins.

Panic was written on all there faces as they thought I was dying.

My feeling during that moment of blacking out was a strange sort of peace, like the best sleep you could ever get. My next thought was if I had died it was the most peaceful way to go.

No Pain
Just....sleep.