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Home » Cardiology » Where I got support and hope for my forgotten type of heart failure

Keith Williams

Patient Educator with Pumping Marvellous

Heart failure is better described as heart inefficiency. It is a pump problem; the heart is not pumping blood as well as it should. 

“We have the results of your tests back. You have heart failure.” With that, the long and, at times, scary journey began. A journey starting with a middle-of-the-night ambulance ride, through a diagnosis of a medical condition I had never heard of — and which Google said would finish me off in 5 years — to months of doctors between them, adjusting doses and types of medication to try and find some balance — at a far lower quality of life than I had experienced before.  

It was also a journey of discovery as I discovered so much about myself and found Pumping Marvellous, the Heart Failure Charity, my primary source of support and information. 

Main types of heart failure  

Heart failure comes in several ‘flavours.’ The two main ones are HFrEF (welcome to the world of acronyms) — heart failure with reduced ejection fraction, in which the heart cannot pump out efficiently.  

The other main one is HFpEF, heart failure with preserved ejection fraction; the heart has problems filling correctly.

Many doctors do not know about or
understand this condition being suffered
by up to 500,000 people in the UK.  

Both lead to a similar set of symptoms, shortage of breath, fluid retention, exhaustion and various other cardiovascular problems, which can interfere with your ability to undergo other essential and lifesaving procedures and treatments. 

HFrEF is a Cinderella condition, hidden and unknown by most, with patients waiting months or years for treatments and appointments. It is treatable. HFpEF is Cinderella’s little sister. She is forgotten about, even by Cinderella herself.  

Source of information and hope 

Currently, there are no treatments for tackling HFpEF directly through the NHS, and specialist nurse and support services are rarely provided for this type of heart failure. Many doctors do not know about or understand this condition being suffered by up to 500,000 people in the UK. However, hope is around the corner where treatments are currently undoing NICE scrutiny.

This is where Pumping Marvellous has been a godsend for us. Not only by providing support but also information about our condition — for us, the sufferers, the public (many of whom think it is some form of heart attack or even cardiac arrest) and medical staff, while, at the same time, fighting for approval of drugs that can treat our condition. But most importantly, by giving us hope. 

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