Newly diagnosed with heart failure
We reckon you are feeling really good about new you? A heart failing, everything you seem to read is negative and therefore what does the future hold? We reckon you are feeling as though you just need to give up?
Well of course you feel down being newly diagnosed with heart failure but just rewind a little. You are not alone. There are 28 million people diagnosed with an inefficient heart and if you live in the UK 1 million are your fellow country men and women, in the USA the figure is 6 million. I know this doesn’t help, we understand this and we are here to instil HOPE and help.
What we would like you to do is listen to what we have to say, we are humans like you who have inefficient hearts and we have rebuilt our jigsaws with the help of others through The Pumping Marvellous Foundation.
A group of our Patient Educators put together some things to think about which we think you should know before you start your new journey. There is nothing new about these “things” but they tend to get lost in the “mist” you are in when you have just been diagnosed. So we are going to try and blow the clouds of doubt and uncertainty and give you awareness of your condition, as we all say “awareness is power”, it gives you the tools to deal with and manage your symptoms and condition.
What is an inefficient heart?
– Reasons for an inefficient heart:
– Coronary heart disease – like a heart attack or angina
– Untreated long standing hypertension (high blood pressure)
– Cardiomyopathy (your heart muscle weakens)
– Heart rhythm disturbance (like atrial fibrillation)
– Damaged heart valves (leaky valves)
– Congenital heart disease
– Myocarditis (inflammation of the heart muscle maybe caused
by a virus)
– Prolonged alcohol consumption
– The use of recreational drugs
– Chemotherapy treatment
Whatever has caused your heart to be inefficient, your cardiologist will suggest a series of tests and treatments. You may have a blood test, an ECG (Electrocardiogram which looks at your heart’s electrical activity) and an ECHO (Echocardiogram which is a scan that looks inside your heart), some of the options your clinician will discuss with you will be:
– Lifestyle changes
– Implantable devices
– Certain types of heart surgery.
Self-managing your inefficient heart is very important. In most cases if you take your medication as prescribed by your clinician along with lifestyle changes can help your heart work as efficiently as it can and help manage your symptoms.
The heart’s inability to pump blood effectively can cause many symptoms. Some of the symptoms people may experience are chest pain, breathlessness during exertion and swelling of the feet and legs. If you experience any of these symptoms talk to your health care provider.
Elizabeth – Patient Educator
Listen to your body
Having an inefficient heart affects people in different ways; what way is yours?
Aleena – Patient Educator
Don't believe the hype
Reference to ‘hype’ is what many will find after plinking away at a keyboard asking the great oracle Google when their untimely passing will come after being diagnosed, broadly speaking, with heart failure.
Many will surmise an evens chance of lasting five years is the answer – that’s 50/50 for those not into gambling!
Halt with that negative thought, for never the twain shall meet. Many, many, most, if not all, do not succumb to what the outdated statistics suggest which means the only way to deal with the flakey spiel is to stick two fingers up and proudly proclaim defiance in the face of adversity – do it now, sing it loud – as much as your fluid filled lungs will let you bellow.
You are now in an exclusive club, among kindred spirits. Find a path of communication, whether that be through the internet, group therapy, stamp collecting – tell someone what is happening inside – and remember, we are legion.
The greatest kick in the tail for many are the comments from well-meaning loved ones and friends, such as “You are looking so well” and “Are you still taking the tablets?”.
The above quotes are very common – although said with the best of intentions fly in the face of the doom and gloom one finds after research. Yep, bit of a melon twister is this condition so reach out to those who understand.
Robert – Patient Educator
People you need to know
Family and Friends: Your family and friends will be just as shocked as you are. You will not only be trying to understand it yourself but they will want to know so be open with them. They are the ones who will support you if the going gets tough. Be honest how you feel as without them knowing they will not understand, therefore not being able to help will make them feel even more vulnerable.
Doctors (GP): Your GP is the key to the door; they will be the ones doing the everyday checks of blood pressures and blood tests; they will be able to contact your cardiologist. If you are worried, they are the person who you will speak to first unless you are having serious problems then you should call 999.
Heart Failure Nurse: You may have a Heart Failure Nurse who is either based at your GP Surgery, Hospital or who works out in the community. They are nurses who specialise in helping people who have an inefficient heart and can help you self-manage your condition. They have a wealth of knowledge which you can tap into.
Heart Failure Rehabilitation: There are many forms of rehabilitation but, for people with an inefficient heart, exercise is a key one in managing your symptoms. It is important to keep the blood circulating so ask your heart failure nurse or GP what is available in your area. They will probably refer you initially as you need to be eased into it.
Cardiologist: This is the main person overlooking your care and diagnosis. They will arrange and interpret tests at the hospital and arrange regular appointments to discuss how you are progressing. You may ask them anything you like and again you should expect an honest answer. If you don’t understand then tell them and get them to explain it to you again.
BIG TIP – Make sure you build up a strong relationship with all the people above. A strong relationship means that both parties get the best result. Remember they are all human and you must ensure that they realise that as well.
Jayne – Patient Educator
Positive mind - Positive results
Talk to your liaison nurse, cardiac psychologist or GP if you have concerns.
Willow – Patient Edcuator
her career. Clinical, straightforward and to the point. “You will have to adjust your life from now on,” she said, handing me literature from the British Heart Foundation, and the local ‘Pals’ just in case I needed to complain about my treatment.
After she had gone I tried to get my head round the term, ‘Heart Failure’; I thought long and hard about the word ‘Failure’ and wracked my mind as to when the last time I had ‘failed’ at anything, I had made mistakes where things had gone wrong, and not turned out the way they should.
I always associated ‘failure’ with a plane losing power at thirty-thousand feet, and plunging into the earth and killing
everyone on board.
I was hospitalised for five weeks until my body adjusted to a heart that was only functioning at 29%. I was a fairly fit 65 year old, who liked to walk and led a fairly healthy lifestyle. My life was changing dramatically, I became short of breath with swelling in the ankles. I was readmitted to hospital five times before they stabilised me, and fitted an Implantable
Cardioversion Defibrillator (ICD) because I was in great danger of sudden death. I look upon my ICD as an on-board paramedic, ready to shock me when needs be.
I have always said that the person who is treating me is not necessarily a nice person, but one who is competent in the job he/she does. ‘Nice’ is when we are all down the pub and congratulating each other on the good work we have just done. I want a medical ally to get me through this period in life, and most of all I want us all to work together to achieve
that goal. It may not come in our lifetime, but a cure will come for the good of our children, and the generations who come after them. Because that’s how medical science works, it always has and always will do. Having an inefficient heart is manageable but like all things you need to work on it.
James – Patient Educator
Pie and Mash / Sausage and Mash
enough to return to work or not. If you are fit enough to work you may have to make a few minor or major changes as to what your job is. Unfortunately we haven’t got the space on this page to really demonstrate to you how to deal with this but one tip is – make sure you keep in contact with your employer rather than them phoning you to find out how you are. You may find you can’t return to work or your employer is not very flexible which means you will have to access the benefits system either on a short or long term basis. We understand your concerns as we have all been there and that you may never have had to be supported before but we give you this piece of advice, pride before a fall.
This is a lot to take in when you are already dealing with a life changing diagnosis but help is out there. The Pumping Marvellous Foundation can point you in the right direction for help and assistance; please contact us using any of the following ways:
Telephone: 0800 9 788133
Remember, you do not have to go through this alone – if you are unsure about anything, we are here to help.
Emma – Patient Educator
Set your Sat Nav
Before you set your Sat Nav take these points into account.
Belief – If you don’t believe in yourself then nobody else will
Attitude – You need a lot of this, an attitude to win
Knowledge – When you have an inefficient heart some of the right knowledge is powerful
Heart failure sufferer’s symptoms are classified in a standard way it is called the NYHA (New York Heart Association) heart failure classification
NYHA I – No limitation of physical activity. Ordinary physical activity does not cause undue tiredness, palpitations, or shortness of breath.
NYHA II – Slight limitation of physical activity. Comfortable at rest, but ordinary physical activity results in tiredness, palpitations, or
shortness of breath.
NYHA III – You are comfortable at rest, but less than ordinary activity causes tiredness, palpitations, or shortness of breath.
NYHA IV – You are unable to carry out any physical activity without discomfort and are tired and short of breath even at rest. If any physical activity is undertaken, discomfort is increased.
Ask your clinician which NYHA level you are, couple that with knowledge from the Pumping Marvellous Foundation with a sprinkle of belief and attitude then you will know what to do.
Nick – Patient Educator
Now for the family briefing
Gail and George (family member) – Patient Educators