Pumping Marvellous

How Heart Failure Changed my Life – Nick Harthorne-Evans, Founder and CEO

After being diagnosed with heart failure at 39 years old, Nick Hartshorne-Evans was motivated by his experiences. He established the first and only patient-led heart failure charity. It offers support and information services for fellow patients and their families, as well as advocating on their behalf.

My story, my jigsaw

Just after New Year’s Eve in 2009/10, I had to take sick leave from work. I had been feeling lethargic beforehand. My condition worsened over the festive period, making it difficult to walk up the hill to my office in Manchester. I felt breathless and, although I had no appetite at all, I noticed and felt that I was gaining weight. During my first visit to the GP, I was prescribed cough syrup, which had no effect. At a second appointment, I was diagnosed with a chest infection, prescribed antibiotics, and had blood samples taken for tests.

My symptoms worsened, and I couldn’t walk five yards. The blood test results indicated a possible liver or kidney infection. I felt so unwell that I was eventually admitted to a general ward at the Royal Blackburn Hospital, where the clinicians tried to determine the cause of my illness. After nearly a week, a registrar examined me, placing his stethoscope on my chest and saying, ‘It’s your heart’. I underwent an ultrasound, not an ECHO, which revealed congestion in my lungs. Twenty-four hours later, I was transferred to the coronary care unit (CCU), where I was diagnosed with heart failure.

I spent two weeks in the CCU and during that time lost five stone in fluid. The health professionals there were convinced that I had developed viral myocarditis in my left atrium, caused by H1N1 influenza (swine flu), which led to atrial fibrillation and left ventricular systolic dysfunction (LVSD) due to dilated cardiomyopathy. Their first priority was to treat my heart failure. I began taking furosemide, warfarin, spironolactone, bisoprolol, ramipril, and digoxin. About seven or eight months later, they started addressing the heart rhythm issues. I underwent a couple of electrocardioversions, which were unsuccessful. After trying both amiodarone and dronedarone, I had a catheter ablation for my atrial fibrillation.

I was relatively fit, active, and ate a healthy diet before my diagnosis, had never been admitted to hospital, and didn’t even have a GP! Also, the subsequent ECHO’s showed no sign of heart disease, so while I didn’t have to make significant changes to my life, I am still taking the optimal doses of medication, which can sometimes be challenging to manage. I have started to focus on what I eat and have a personal trainer three times a week, so my self-management regime was optimised.

When I received a diagnosis of heart failure, I felt as if I had been hit by a boxer; my life seemed to fall apart. I was frightened, but I think I would have been even more worried if I had fully understood what it meant. The support was not as readily available as it would have been in cases like a cancer diagnosis. However, the nursing team on CCU was exceptional. The heart failure nurse manager, Angela, was fantastic; she became my “Florence Nightingale”. She visited me a few days before I was discharged and provided information about the condition. I felt so comfortable with the nurses on CCU that I believe I was the first, and possibly the last, person who didn’t want to be discharged and wished to stay on the ward. With a condition like heart failure, I know that excellent nursing support is essential.

Heart Failure has transformed my life. A good analogy before my diagnosis is that my life was like a nearly complete jigsaw. After the diagnosis, it became a mess of pieces; self-management is now about finding the corners and colour combinations. About five months after being diagnosed, I decided to establish a support organisation for people with heart failure. The support and advice I received from health professionals was excellent; however, the patient information sometimes lacked a personal touch. We now understand how important this is. Leaflets and booklets seemed to target older people and were written from a clinical standpoint. There was little genuine information for all heart failure patients, and the content needed to be more engaging and positive. Additionally, there was inconsistent information, so I turned to the internet, where, of course, facts are not always accurate and require careful review.

The Pumping Marvellous Foundation was initially intended as a local patient support group. It quickly expanded into a national organisation. It now partners with NHS England and supplies over 350,000 pieces of patient information to NHS teams to hand out to patients every year.

Saying I planned the incredible growth of the foundations is true. With a successful career behind me, recognised nationally for my business achievements, I suppose it was only a matter of time. This may sound arrogant, but I believed in my abilities.

The Pumping Marvellous Foundation is a national charity run by and for people and their families affected by heart failure. The organisation supports those diagnosed with heart failure and aims to address all the questions that many may feel uncomfortable asking.

Remaining positive is crucial when managing heart failure. It’s important not to give up. We understand it’s challenging, but you will find your way to cope. You’ll feel better for it. Here are some words to lift your spirits:

Determined – You are not going to allow your condition to rule your life

Knowledge – Understand as much about your condition as you can, so you can make the right decisions for yourself.

Focused – Don’t let the bad days spoil the show, be consistent and don’t give up

Inquisitive – Always wonder what if?

Expert – You’re the expert on your condition

Self Assured – Know what you are doing is the right thing for you

Positive – Remember you have a wonky heart, not a failed heart. Always remember that fact

Understand – Without understanding your condition you aren’t an expert

Improve – We should be trying to improve in everything we do, so why not enhance your Heart

It’s very important that you discuss your medication with your nurse or doctor. The following information provides you with 3 key tips that are important for you to know as a heart failure patient.

Tip 1 – Your Doctor asks you to put your hand in the fire – would you do it? Of course you wouldn’t so why do you take your pills without asking these three very important questions?

• What are your pills?
  Why, because you need to know why you are taking them
• What do they do?
  Why, because you need to know to manage your condition
• Any side effects?
  Why, because you need to know to understand your condition

Tip 2 – Everyday – Make sure you take your pills as prescribed – try not to miss your dose. Use a weekly pill box to remind you and establish a routine. It is important to take your pills as prescribed by your doctor or nurse because, by taking them regularly, you are increasing their effectiveness.

Tip 3 – Your cardiologists will tell you what the best dosage is. They will probably start you on a lower dose to get you used to it and then increase the dosage. This doesn’t mean you are getting worse, but they are trying to get you to the most effective dose. It may take you a bit of time to get used to them, but keep following your doctor’s or nurse’s instructions. This process is called “up-titration” and is very important to make sure the pills help you as much as possible.

“You are what you eat” and it is so true. People who have heart failure need to eat healthy vitamin packed food.

Here are some top tips for great tasting healthy food and it’s not all “eat your greens!”

• What foods do you like? Buy a recipe book that includes these foods.
• Each week, gradually build up your food cupboard with heart failure-friendly ingredients such as spices, herbs, canned vegetables and fruit in natural juice, rice, pasta, olive oil, and more. Always aim for no salt or very low salt, low sugar, and low fat.
• Create a weekly menu and vary it – look online for ideas.
• Do your food shopping twice a week. If you spend £50 a week, then spend £25 twice a week and focus on buying fresh ingredients.
• Try to avoid buying processed foods. Learn about food labelling by visiting this site
• Don’t add any salt. If your recipe says to add salt, don’t. You may have become used to salt, and it will take a couple of months to adjust to not adding it to your food. All food contains natural salt, so you don’t need to add more. Spices can replace salt in certain dishes.
• Watch your portion size. Visit this site for the eatwell guide
• If you fancy a snack, grab a piece of fruit or try a new type to add some variety. 

Exercise is one of the most important things you can do to help manage your condition and improve your quality of life. Exercise comes in many forms, and it isn’t all about going to the gym; walking your dog or simply taking a walk will do. It is important that you speak to your doctor or nurse about wanting to become more active, as they may offer you some guidance on what you can do and what you should avoid. If you’re fortunate, they might refer you to heart failure rehabilitation.

We know it’s not easy, but if you consider the points below, you will at least have a good start.

A – Attitude – if you want to you will. You will never know how it feels if you don’t do it

C – Consistent – Make time for activities in your day and week where you know you don’t have an excuse to cancel – get your carer or friend to help you plan

T – Targeted – Set yourself gradual slopes to climb, don’t push it. Taking part is more important than winning here. Your slopes will turn into hills and then mountains. The more you do the easier it is

I –  Interesting –Interest is not just about the activity; it is also about how it benefits you. Find activities you enjoy and talk to your local council about what is available

V – Varied – Don’t just do one activity, mix it up a little bit – as they say, variety is the spice of life

E –      Enjoyable – A lot of things we do in life are enjoyable, make exercise part of your enjoyment. Use it to help improve your life

Check out our Cardiac Rehabilitation page here for more information and also details on our free online courses

You may find that your Nurse or Doctor has put you on a daily fluid restriction so that you don’t accumulate fluid. If you are on a fluid restriction, then this section is for you.

Please note that the NICE Chronic Heart Failure Guidelines do not routinely advise people with heart failure to restrict their sodium or fluid consumption.

Ask about salt and fluid consumption and, if needed, advise as follows:

• restricting fluids for people with dilutional hyponatraemia
• reducing intake for people with high levels of salt and fluid consumption.

Fluid management is a very important part of self-managing your heart failure if your doctor or nurse has restricted your fluid intake.

Restricting how much fluid you take helps to control swelling of the feet and ankles, sudden weight gain, breathlessness and how effective your water tablets are.

Fluid doesn’t mean just what you drink but also liquid in a stew, canned fruit, fruit itself and ice cream etc.

These are some of the tips are patient educators believe help them when on a fluid restriction.

Top Tips for Managing Fluid

• Use a 500ml water bottle as a way of measuring fluids
• Try adding “no added sugar” fruit squash” to your water, variety is important
• Take alcohol out of your routine. We’re not saying it can’t be a treat but in moderation occasionally. Alcohol also interferes with Warfarin.
• Handling thirst, especially in hot weather, is difficult; therefore try these techniques
• Suck on frozen grapes, sugar-free boiled sweets, ice cubes or ice lollies
• Eat thin slices of melon, pineapple or orange
• Sugar-free chewing gum – try all the different varieties
• Use a smaller glass or fill a small atomiser, you can buy them at your pharmacy or on the web, with fresh water and spray in your mouth to quench your thirst

Remember, in hot weather, you will need to increase your fluid intake; therefore, consult your nurse or doctor for guidance.