Your Jigsaw

How heart failure changed my life

After being diagnosed with heart failure at 39 years old, Nick Hartshorne-Evans was spurred on by his experiences to set up the first and only patient led heart failure charity which provides a support and information service for fellow patients and their families.

My story, my jigsaw

Just after New Year’s Eve around 4 years ago, I had to take sick leave from work. I had previously been feeling lethargic, which had only got worse over the festive period, and had been having difficulty walking up the hill to my office in Manchester. I was feeling breathless and, although I had no appetite at all, I could see and feel that I was putting on weight. My first visit to the GP saw me prescribed cough syrup and, when that had no effect, at a second appointment I was diagnosed with a chest infection, given antibiotics, and had blood taken and sent away for tests.

My symptoms worsened where I couldn’t walk 5 yards and the blood test results revealed that I had a possible liver or kidney infection. I was feeling so unwell that I was finally admitted to a general ward at the Royal Blackburn Hospital while the clinicians tried to work out what was wrong with me. After almost 1 week, I was seen by a registrar who put his stethoscope to my chest and said ‘It’s your heart’. I had an ultrasound, not an ECHO which showed congestion on my lungs, and was then transferred to the coronary care unit (CCU) where I was diagnosed with heart failure.

I spent 2 weeks on CCU and in that time lost 5 stone in fluid. The health professionals in the unit were sure 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. The first thing they wanted to do was treat my heart failure so I started taking furosemide, warfarin, spironolactone, bisoprolol ramipril and digoxin. About 7 or 8 months later, they started to treat the rhythm—I had a couple of electrocardioversions, which didn’t work, and 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, 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 huge changes to my life, I am still taking the optimum doses of medication: bisoprolol, ramipril, dronedarone and apixaban, which can sometimes be difficult to manage. I have really started to focus on what I eat and have a personal trainer 3 times a week so my self-management regime is optimised.

When I was given the heart failure diagnosis, I felt like I had been hit by a boxer my life felt as though it had fallen apart. I was frightened but I think that I would have been more worried if I had fully understood what it was—I was told quite matter of fact, in front of my parents so I don’t think I realised it was as serious as it was. Also the support was not available as it would have been if, for example, I had been diagnosed with cancer. However, the nursing team on CCU were exceptional. The heart failure nurse manager then Angela, was fantastic, she became my “Florence Nightingale”. She came to see me a few days before I was discharged and gave me information about the condition. She still supports and cares for me and I find it really helpful to talk to her to understand what stage my condition is at and to decide on what steps to take next. I felt so comfortable with the nurses on CCU that I think I was the first, and maybe the last, person who didn’t want to be discharged and wanted to stay on the ward! With a condition such as heart failure, I know it is really important to have good nursing support—I can manage the condition but if I ever needed Angela or any of her team, I knew they were always there for me.

Heart Failure has changed my life. A good analogy is before I was diagnosed my life was a jigsaw, nearly complete. After diagnosis it is a mess of pieces so self-management is all about finding those corners and colour combinations. About 5 months after I was diagnosed, I decided that I wanted to set up a support organisation for people diagnosed with heart failure because, while the support and advice I received from health professionals was great, the information I was given was somewhat lacking the personal patient touch that is so important. Leaflets and booklets seemed to be geared towards older people and written from a clinical perspective; there wasn’t any real information for all heart failure patients and the content needed to be more engaging and positive. There was also a lack of consistent information so I turned to the internet where, of course, facts are not always right and need to be unpicked.

The Pumping Marvellous Foundation was just meant to be a local patient support group but quickly grew into a national organisation and as well as being the CEO I am also the President of iHHub which supports organisations like The Pumping Marvellous Foundation around the world to be effective at supporting patients in their management of their condition and to advocate for their rights, just as The Pumping Marvellous Foundation does in the UK but on a global level so watch this space.

Saying I planned the foundations amazing growth is true, however with a very successful career behind me where I had been recognised nationally for my business achievements then I suppose it was only going to be a matter of time. This may sound arrogant but I believed in my ability and I have found a lot of people who believe in what I do.

The Pumping Marvellous Foundation is a national charity led and driven by people and their families who suffer from heart failure. The organisation supports people who have been diagnosed with heart failure and aims to answer all those questions that may people don’t always feel comfortable about asking. I am a National Institute for Health and Care Excellence (NICE) patient expert, the group is invited to conferences and other events, and has been commissioned for NHS projects twice. One was to develop a long-term toolkit for heart failure patients with Angela and her nursing team, which includes information about everything, from travel insurance and social security benefits to lifestyle changes, drugs and devices. We researched it as much as we could, sourcing information from patients across the world as well as other heart charities, organisations and clinicians. It is completely produced by patients to be given to patients before discharge, and although it is still being trialled you can see it is having an impact already.  We work with a variety of funders who provide funds to plug what we see as big gaps in both the awareness of the condition, the understanding of the condition, the provision of self-management information and techniques as well as our responsibility to advocate for our beneficiaries in the UK health economy.­­­ Please feel free to contact us via email on hearts@pumpingmarvellous.org so we can help people like you.

A little bit of ``attitude``

Staying positive is important in managing your heart failure. It is very important not to give up. We know it’s tough but you will find your own way to manage. you’ll feel better for it.

Here are some words to get you in the mood:

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

Knowledge – Understand as much about your condition as you can – you can then make the right decisions for you

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 your own expert on your condition

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

Positive – Remember you have an inefficient 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 improve your Heart

Take your pills

It’s very important that you talk to your nurse or doctor about your medication. The following information gives you 3 key tips which we believe you need to know about 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 3 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 weekly pill boxes to remind you, get into the rhythm. It is important to take your pills as prescribed by your doctor or nurse because by taking them regularly you are building up their effectiveness.

Tip 3 – Your Cardiologists will tell you what the best dosage is. They will probably start you off on a lower dose to get you used to it and then up 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 use to them but keep following your doctor’s or nurse’s instructions. This is called “up-titration” and is very important to ensure the pills help you as much as possible.

You are what you eat

“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 food do you like – buy a recipe book that has these foods in
  • On a weekly basis build up your food cupboard with Heart Failure friendly ingredients like spices, herbs, canned vegetables and fruit in natural juice, rice, pasta, olive oil and the list goes on. Always focus on no salt or very low salt, low sugar and low fat
  • Create a menu for the week and vary it – look on the internet 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 not t0 buy processed foods. Understand food labelling by going to this site here
  • Don’t add any salt, if your recipe says add salt, don’t. You may have become accustomed to salt and it will take a couple of months to adjust to not having to add salt in your food. All food has salt in it naturally so you don’t need to add it. Spices can replace salt in certain foods
  • Watch your portion size. Visit this site for portion sizes
  • If you feel like a snack pick up a piece of fruit, try new fruit or a different variety to mix it up a little

Lets get moving

Exercise is one of the most important things you can do to help you manage your condition and improve the quality of your life. Exercise comes in many formats and it doesn’t all mean the gym, walking your dog or just simple walking will suffice. It is important that you speak to your doctor or nurse about wanting to start getting active, they may give you some pointers which will help you with what you can do and what you can’t do. If you are lucky they will refer you to heart failure rehab.

We know it’s not easy but if consider the below then at least you 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 the interest in how it is helping you. Find activities you enjoy, speak to your local council about what is on offer

V – Varied – Don’t just do one activity mix it up a little – 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

Manage your fluid

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

Fluid Management is a very important element of self-managing your Heart Failure if your fluid intake has been restricted by your doctor or nurse.

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 atomizer, 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.