Pumping Marvellous

Nick is our Chairman, founder and Trustee of Pumping Marvellous and here is his amazing story but unfortunately not that unusual.

I was diagnosed in January 2010 with Heart Failure. The actual diagnosis was Viral Myocarditis which led to left ventricle impairment and atrial fibrillation. My ejection faction rate after my first Echo cardiogram was 15%, that is low, very low. All this language sounded very alien to me and to be honest I had a roller coaster of a time, as my Consultant said “an evangelical experience”.

It took 4 weeks to diagnose Heart Failure, my legs, feet, toes and abdomen were swollen which I later found out was fluid (medical term is Oedema), I was hallucinating at night seeing green aliens, ask my 8yr old daughter, this was because of the fluid and toxin build up and I was acutely breathless. Basically my Liver, Kidneys and my Heart were shutting down, I couldn’t walk 10 paces without feeling acutely tired – my condition was CHF – Congestive Heart Failure with severe Pulmonary Oedema, my body was failing as the engine room wasn’t working properly.

Just in time I was put into the care of the fantastic Coronary Care Unit who blitzed me with all types of drugs and I lost 35kgs of fluid in 4 days – The Royal Blackburn Hospital Diet, I thought about publishing it. This was achieved through IV Furosemide. After a week on the CCU ward I was transferred to a normal coronary ward to recuperate. I spent 1 week in this ward and was then discharged.

I was then put into the very capable hands of Anglea Graves who is the Clinical Lead for the East Lancashire Specialist Heart Failure Nursing Team. If you have Heart Failure then you must have a Specialist Heart Failure Nurse. I couldn’t have done it without her.

So I had a great consultant Dr John McDonald and Angela Graves my Heart Failure Nurse. Medical support, sorted.

Now what did we need to do. I was referred to rehab which introduced me to exercise that was specifically designed to get me back to as normal a position as possible. Angela and Gemma were fantastic especially in alerting me to the fact my pulse was exceeding 180 beats per minute and the electronic gadgetry was getting confused with my Atrial Fibrillation. This lasted 8 weeks and by the end of it I had an appetite for it although I wasn’t really any good at it, who cares as this is all about me.

I was referred to the Burnley Healthy Lifestyle Team on their BEEP programme which was 12 weeks of hell, well it felt like hell but what a fantastic job Beth and Bill did. I owe these guys a lot and they are real experts in rehabilitation. They guided and coached me through my own exercise programme and by the end of it I felt capable and equipped to go out in the real world and compete with all those gym bunnies. My programme finished in October 2010 and it was one of the most frightening times of my life as I realised all this great support was going to disappear. So it was down to me.

I went back into sinus rhythm out of AF in November 2010 so this was a big milestone but I was still one of those Heart Failure patients that look great from the outside but my inner workings weren’t still correct.

I have always been a determined individual, “No” does not exist in my vocabulary and I was determined to get to grips with my condition right from the start. So because Ineeded to focus on my left ventricle pump rate – that’s what I did.

Knowledge is key, without knowledge you can’t understand your condition. Take an interest and get obsessive with your condition. Understand your limitations but try to develop those limitations. If you want to do it you will. Do not underestimate the power of your determination you will be surprised what you can do. Understand the key levers as to what will effect your condition, my charity has done this for you. They are Nutrition – eat the right stuff and keep focussed around fresh fresh and fresh with low salt intake no more than a level tablespoon of added salt a day (2mg). Reduce your fact intake and cut out any added sugar. Learn to read and interpret food labels, if you buy fresh all the time you won’t have to read food labels will you. Don’t forget supplements, I focused on Vitamin C, Vitamin D, Bovine Colostrum, Acai berries, Krill Oil andvery high quality New Zealand Fish Oils which included ubiquinol. Exercise is really very important but make sure you know your limits and always take advice from a clinician before you start. You will find that exercise releases special endorphins that make you feel great and greater for a couple of days, always try and be active in whatever you do and don’t be put off by Gym Bunnies, these are people who strut their stuff and aren’t looking at you but they expect you to look at them. When I exercise I am in my own little world and I have a structured routine which I don’t deviate from and stretch it a little if I want. I find my music is very important therefore some of my tracks Beat it, Grenade, Welcome to the Pleasuredome (wait for the instrumental on this), Common People, Two Tribes, Atomic, Billie Jean  and Beautiful Nightmare you get the drift and rather eclectic. Take your pills; it’s very important to not miss your prescribed tablets but understand what they do and why you are taking them, challenge the clinicians in the right way to get the right answers don’t just take them because you have been prescribed, understand your drugs. Fluid management is very important and you must stick to the guidelines. I was told not to take anymore than 2 litres of fluid in a day so I didn’t. What you have to realise is that lots of everyday things have fluid, chopped tomatoes and apples as examples. I managed this by buying half a litre bottle of bottled water and I never had anymore than 3 which was 1.5 litres and then the other was made up of Green Tea and natural fluid from oranges etc etc. If you take to much fluid on board you will feel worse, guaranteed.

Now my EF is 61% 18 months after my diagnosis and being weened off my drugs.

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Cardioversion here we come

Just had my initial consultation with Angela Graves my Heart Failure Nurse and Dr John McDonald my cardio consultant who has just set the date for for my Cardioversion.

Can’t say I am completely looking forward to it, I still have an aversion to needles when I have my general anaesthetic but I realise that it could take me out of AF and back into Sinus Rhythm so I suppose this is a really good thing. The only big decision I had to make was taking Amiodarone.

Amiodarone is an Anti-Arrhythmic drug that has some quite perturbing side effects and I will let you investigate that. It has a half life of 45 days which means in layman’s terms it doesn’t get into your body for 45 days and therefore takes a long time to exit as well. Therefore John McDonald and I have agreed that I start off on 200mg of Amiodarone and continue this until I get my Cardioversion on the 25th November, if I don’t make it into to Sinus Rhythm and stay in AF then I will come off Amiodarone or if I go into Sinus Rhythm then I stay on Amiodarone for 90 days and no more. This is to enable my heart to have the best possible chance of staying in Sinus Rhythm. The reason for taking the Amiodarone before Cardioversion is that it increases the chances by 15-20% of the heart going into sinus rhythm from an electrical Cardioversion. It then keeps the heart stable by trying to prevent a flip over to AF again.

So lets give it a go and keep abreast of my shocking performance!!!!! It reminds me of that Carry on Film Carry on Screaming when Kenneth Williams says the famous line “Frying Tonight”

What I will stress is that to have these levels of discussion you need to have the right relationship with your Consultant and Nurse. Both John and Angela are very supportive but probably think I ask too many questions. Because I challenge my clinicians I am an expert patient – you should try it.