Living Well with Heart Failure
Part of our mission at Pumping Marvellous Foundation is to raise the profile of Heart Failure, which we have always felt, doesn’t get the coverage it should. As a result, it has a lower profile than other conditions with similar or lesser levels of incidence, both amongst the public and policy makers. Working with our colleagues from the University of Lancaster has confirmed that to be the case, and it leads to an obvious next question; what are we going to do about it?
This report is part of the answer to that question. It is a step along the path to raising the profile of Heart Failure. We want to use data and academic studies; we want to tell real stories from our amazing and committed Pumping Marvellous Heart Failure patient and family community; and we want to continue to work with our world leading team of clinical advisers, to improve people’s lives.
This report lays bare the difficulty we have talking about Heart Failure, both in terms of how seldom it is spoken about, and the context it is used in. As you will see, it has negative associations, different from those of other conditions and this must have an impact on the way it is viewed. We want to begin to alter that perception by highlighting the problems, and also pointing out the success stories. We are under no illusion that a diagnosis of Heart Failure is a major shock to people, but we want to make clear that it is treatable, manageable, and that people can – and are – living well with their diagnosis of Heart Failure.
This report won’t alter those perceptions by itself, and it won’t be achieved quickly, but we are determined that it will happen. By raising the profile of the condition, we hope to be able to drive continuing improvements in the diagnosis, treatment and care of people with Heart Failure. We want to give as many people as possible the best chance to live well with Heart Failure.
LIVING WELL WITH HEART
After being diagnosed with heart failure at 39 years old, Nick Hartshorne-Evans was spurred on by his experiences. He set up the first and the only patient-led heart failure charity. It provides support and information service for fellow patients and their families, along with advocating for them.
My story, my jigsaw
Just after New Years Eve in 2009/10, I had to take sick leave from work. I had previously been feeling lethargic. It got worse over the festive period, and it had been challenging to walk 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. That had no impact. 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, 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 one 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. Twenty fours later, I transferred to the coronary care unit (CCU), where I was diagnosed with heart failure.
I spent two weeks on CCU and in that time lost five 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. I started taking furosemide, warfarin, spironolactone, bisoprolol ramipril and digoxin. About 7 or 8 months later, they began to address the heart rhythm. I had a couple of electro cardioversion, which didn’t work. 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 considerable changes to my life, I am still taking the optimum 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 like I had been hit by a boxer my life felt as though it had fallen apart. I was frightened, but I think I would have been more worried if I had fully understood what it was. The support was not available as it would have been if, for example, I had a cancer diagnosis. 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. I was 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 essential to have excellent nursing support.
Heart Failure has changed my life. A good analogy before my diagnosis, my life was a jigsaw, nearly complete. After diagnosis, it is a mess of pieces; self-management is all about finding those corners and colour combinations. About five months after diagnosis, I decided that I wanted to set up a support organisation for people diagnosed with heart failure. The support and advice I received from health professionals was great; however, the patient information somewhat lacked the personal patient touch. We now know this 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. Quickly it grew into a national organisation.
Saying I planned the incredible foundations growth is true. With a successful career behind me, recognised nationally for my business achievements, I suppose it was only going to be a matter of time. This may sound arrogant, but I believed in my abilities.
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 many people don’t always feel comfortable about asking.
Staying positive is essential in managing heart failure. It is vital not to give up. We know it’s tough, but you will find your 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 the 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 enhance your Heart
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” 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 to 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
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
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 2018 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 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.
Dictionary – “A special quality or feature regarded as the chief factor in the success of something or someone.”
So, what’s your “Secret Sauce?” What makes you tick?
At Pumping Marvellous, we know it takes some real inner drive to live well with heart failure. Pumping Marvellous are Secret Sauce catalysts; we draw out people’s inner Secret Sauce, people’s superpowers and enable other people to learn from other people’s experiences.Learn more