Our readers share their stories of living with heart conditions and their views on everything from the progress of medical science to cardiac rehabilitation.
I was walking to a friend’s house when I suffered a cardiac arrest. What are the chances of an off-duty paramedic driving past at that moment? Straight away, she started giving me CPR and called for the ambulance. To restore my heart to its normal rhythm I was shocked with a defibrillator and taken to Jersey General Hospital. After two days I was flown by air ambulance to John Radcliffe Hospital where I was fitted with an implantable cardioverter defibrillator (ICD).
If it was not for this woman, who I call my guardian angel, I would not be writing this story. Her skill and professionalism saved my life. Jersey is the type of island where you’re always bumping into people and I often see her and give her the biggest hug. My life now could not be better. I have fully recovered and I am so lucky to still be in contact with my guardian angel.
Phil McCulloch, Jersey
Heart Matters Editor Sarah Brealey replies:
That’s wonderful that a passer-by saved your life. Most people who have an out-of-hospital cardiac arrest don’t survive, which is why the BHF is working hard to create a Nation of Lifesavers – you don’t have to be a paramedic to do CPR.
I am going to love trying your new ways to eat my porridge oats, as I eat them all year round. I’m currently enjoying it with fresh fruit, a teaspoon of coconut oil, a teaspoon of cinnamon and a good pinch of cayenne pepper. It gives you a nice gentle glow to face a chilly day.
Jacqueline Wilkin, Frome
Victoria Taylor, BHF Senior Dietitian, says:
“Porridge is a great base for all sorts of flavour combinations. The cayenne and cinnamon are great ideas for adding flavour without needing extra sugar or salt. As coconut oil is high in saturated fat, a spoonful of low-fat Greek yoghurt or a teaspoon of no-added-salt-and-sugar nut butter would be good alternatives to give the porridge some extra creaminess, but with less saturated fat.”
Bell ringing after heart surgery
Are any Heart Matters readers also bell ringers? I would welcome any experience or advice on returning to ringing after heart problems.
In October 2016 I had heart bypass surgery. In January this year, after a collapse, I had a pacemaker implanted. A week later I had a catheter ablation to treat an irregular heart rhythm. I’m now looking forward to getting back to ringing.
Katherine Scholfield, Wakefield
Christopher Allen, BHF Senior Cardiac Nurse, says:
“As bell ringing involves the person lifting their arms above their head to pull the bell, it would be appropriate to wait until the sternum is fully healed before returning to it, which is at least 12 weeks after surgery if things have gone well. We would recommend completing a cardiac rehab programme. The staff at the programme can also advise on whether it’s OK for you to resume the activity.”
If you have any tips for Katherine, email Heart Matters and we’ll pass it on to her.
Time to dance
In response to George Illsley’s letter about folk dancing, I would like to add that it’s never too late to take up such an activity, but it’s also never too early. I began square dancing at the age of 13 and am still involved 45 years later.
These clubs would love to welcome more young adults, and could be especially helpful to those with chronic health problems who are looking for a safe activity in a supportive environment.
I would also like to add that I suffered a stroke four years ago and returned to my local square dance club five weeks later. Although the exercise was both mentally and physically demanding, I found it to be of immense benefit to my recovery.
Zoe Bremer, Nottingham
Cycling around the world
My husband has always enjoyed cycling. Even as a teenager, it was a favourite way of relaxing at weekends, touring around the lovely scenery of Scotland.
Five years ago, he had a triple heart bypass at Papworth Hospital. As he recovered, he decided he would get his fitness back by keeping his cycling going, but decided he needed a challenge. He had read a book by a young guy who had cycled around the world, and thought: "Now there's a challenge!"
Obviously, for many reasons, it was not practical to do the actual trip, but in miles he could! Only a couple of months after his operation, he was back on his bike, doing what he could manage safely. Five years later, he has been out almost every day, building up the distances, usually from home and occasionally on holiday when we took our bikes with us.
We have been married almost 52 years; my husband is 75 now. In the five years since his operation, he has clocked up almost 18,000 miles. A couple of months and he hopes to have completed his 'round the world trip'. I too had a heart operation, a valve replacement and single bypass, three years before my husband, and have a pacemaker. I accompany him sometimes on trips around Norfolk, but certainly can't match his fitness - or motivation!
I am immensely proud of his achievements, and would say to anyone else facing heart operations: "Nothing's impossible!"
Stella Carslaw, Norwich
I'm fed up with the way the BHF constantly censures fried food as the devil's work, while promoting other ways of cooking as super virtuous.
Take page nine in the Winter issue of the magazine, for example. "The BHF says: Eggs are nutrition... Poached eggs on wholegrain toast is much healthier than a fry-up."
Eggs can be fried with very little fat
A 'fry-up' conjures up a vision of the typical greasy spoon on the A20, doesn't it? But eggs can be fried with very little fat. A quarter-teaspoon of avocado oil in a small pan is perfectly sufficient to fry an egg in, especially if you put a lid on the pan to allow the steam to help cook it. It still tastes like a proper fried egg, though! To write off fried eggs as if they are somehow deadly dangerous is a bit silly, in my view.
Michael Mitchell, Spalding, Lincolnshire
Our Senior Dietitian Victoria Taylor replies:
Thank you for your letter. When we used the term 'fry-up' we were referring not only to fried eggs, but describing a traditional fried breakfast including, for example, sausages, bacon and black pudding. Collectively this makes a breakfast that's high in calories, salt and saturated fat.
It's true that eggs cooked as you describe would be consistent with a heart-healthy diet, and we could also have said that eggs poached or fried in a little unsaturated oil on wholegrain toast are healthier than a fry-up.
Healthy pies and pasties
I was interested in your article 'Have your pie & eat it' (Winter 2016/17). I now make many pies and pasties using ordinary bread dough instead of pastry. I make it from scratch, but you could use packet bread mix (choose one which is lower in salt) and use a tablespoon of olive oil in the dough to help it stretch. Let it rise once, then roll out thinly over your dish. It doesn't need an extra rise. You can glaze as usual.
I find that the amount of dough for one bread roll can be used to make a decent-sized pasty, which I fill with lots of veg and beans.
Mary Bendall, Worcestershire
I always have a bag of frozen mixed berries in the freezer. Add some to the fresh fruit of your choice, to make an extra healthy and luxurious crumble, especially if the topping includes chopped nuts, oats and seeds.
Margaret Wragg, Altrincham, Cheshire
The evolving NHS
Readers may be interested to hear about the changes in the care of heart patients that I find impressive.
I had a heart attack in January 1995 and was whisked off for the standard treatment in those days - a clot-busting drug (thrombolysis). I needed further investigation, so was put on the waitlist for an angiogram, eventually rising to the top. As a result, I had an angioplasty in April 1997.
I started getting involved in patient and public representation groups
This chain of events gave me an interest in cardiology and I started getting involved in patient and public representation groups.
It was in this role a few years ago that I was involved with the introduction of primary percutaneous coronary intervention (angioplasty) in my local area. This was a new treatment for heart attack patients that saw them taken straight to the operating room for an angiogram and subsequent treatment. Our target time between the logging of the ambulance call and the patient being in the hospital with everything ready to go was 120 minutes, shorter than the then national target of 150 minutes.
So the patient journey that had taken me more than two years is now being accomplished in two hours - a startling achievement for the NHS.
John Walsh, Swindon
Statins and grapefruit
The Winter 2016/17 edition of Heart Matters has several references to statins. [The healthy cooking article suggests "balanced meals" and includes "half a grapefruit".]
I have been taking statins for more than 10 years. The leaflet with my latest supply explains: "Grapefruit juice contains one or more components that alter how the body uses some medicinal products, including simvastatin film-coated tablets. Consuming grapefruit juice should be avoided."
Please include some information on statins and grapefruit in your next edition.
John Bowers, Gwynedd
Heart Matters Medical Editor Maureen Talbot replies:
Thank you for your letter. You are correct that grapefruit and grapefruit juice interact with simvastatin, increasing its level in your blood, and should be avoided if you are taking this statin. Large quantities of grapefruit juice can interact with atorvastatin, but the occasional glass of grapefruit juice, or half a grapefruit, is thought to be safe.
Currently, healthcare professionals advise it is safe to drink grapefruit juice and eat grapefruit if you're taking other types of statins.
Running after recovery
I am 56 years old and in late 2015 I was suffering with bad chest pains and severe breathlessness when I was out walking my dog. I, like many men, ignored the pain until I was advised to see my GP. I had two ECGs, which were clear, but as a precaution I was sent for a heart scan and an angiogram.
I am now back walking my dog and doing lots of gym work
Astonishingly, the angiogram found I needed a quadruple bypass, as my arteries were 95 per cent blocked.
In July 2016 I had surgery and am now back at work. The care I received from the staff at Castle Hill Hospital near Hull was phenomenal and I am now back walking my dog and doing lots of gym work.
This year I'm planning to take part in the Great North Run and raise some worthy funds for the BHF. Anyway, here's to the BHF and all the researchers - keep working hard!
Martin Wood, East Riding, Yorkshire
Information and inspiration
I have found your magazine to be very interesting and full of knowledge that helps me to promote information and exercise to my over-50s exercise class, many with high blood pressure. Your Autumn issue included so much information on high blood pressure and how to prevent it that I have forwarded it on to my class.
Recently, I had some bad news that my father has to have heart valve surgery. This inspired me and my close friend of 50 years, Sue White, both 54 years old, to set out to walk the 68-mile coastal path on the Isle of Wight in aid of the BHF. It was the most beautiful scenery that we have seen. I also ran an exercise class where I collected £257.50, which was donated after our walk.
This week my father had a repair and replacement of two heart valves, at St George’s Hospital in Tooting – an amazing hospital. I can’t thank the staff enough for what they have done. He is doing really well.
I will continue to support your charity for the great work that you do.
Sue Scarlett, Fleet, Hampshire
The Autumn 2016 issue was my first Heart Matters, and what a delight to find, at last, a magazine that is promoting folk dancing. I went folk dancing in the YHA when I was 20 years of age, and am still doing it aged 88. I taught my wife-to-be, and could go sometimes three times a week. My wife Brenda is now in a nursing home and I was unlucky in June to have a heart attack.
Now the folk dancing season has started again, I want to get to dances, even if I have to sit one or two out and just listen to the lovely music. I hope my article will get some members interested.
George Illsley, Coventry
Flying high after heart problems
I wanted to send you this letter to give other people encouragement. I have had heart problems in the past and ended up going to A&E on three occasions.
This was three years ago and my health is improving. I lost weight, exercise at a cardio group, and go swimming and walking. I now feel healthier than I used to – so much so that I did a tandem parachute jump in Wiltshire. My age (I’m 70) wasn’t a handicap.
I hope this information will give some hope to others. It takes time, but little by little it can be achieved.
Pam Hawker, Portland
My father died in 1984, aged 66, of a heart attack. In 2005 I was first diagnosed with aortic stenosis [narrowing of a heart valve] and went on to have a new mechanical valve and single bypass. I suffered with atrial fibrillation twice since, but I’m now OK, though I still have high blood pressure.
I’ve been on a six-week cardiac rehab course supplied by the NHS, which was really good. My overall care by all concerned at the NHS has been fantastic. The operation did not worry me, I was just so grateful that this is now available, as I may have suffered the same fate as my dear dad.
Nicholas Wells, Reading
I became a survivor of a heart attack 16 years ago, which left me with some of my heart muscle dead or dying, and for the first two or three months I felt as if I would never recover my fitness.
I have now worked for the last 16 years with no sick days
I have now worked for the last 16 years with no sick days and feel better than I did in 2000. I was told at the time that, for every stone I was overweight, my heart had to work much harder. So I began a regime of three miles’ walking per day, listening to my favourite music via headphones. I’m still here and still walking.
Many thanks for Heart Matters, it’s a great source of information.
Philip Parkinson, Newcastle upon Tyne
I find Heart Matters highly informative and an enjoyable read. I like in particular the personal stories about people who have gone through heart-related issues.
In the Autumn edition, the article about Anna and Edward Symonds was intelligent and poignant. The deeply thoughtful and honest account of what must have been an incredibly traumatic experience for the Symonds family brought home to me, to some degree at least, just what this family must have gone through, and I certainly wish them all the very best for the future.
Paul Boyle, Brighton
In April 1994 I had a double bypass and was put on statins. In the course of a post-operational consultation with my surgeon some months later, he informed me that the statins I was on were having an adverse effect on my liver and switched me to a different type of statin. This did not solve the problem. As a result I was taken off statins and prescribed a cholestyramine powder, to be taken twice daily. This seems to be effective and I have suffered no ill-effects taking this and other medications all these years.
I am active and in my 90s, playing golf and visiting a gym twice weekly. It is a shame that the many critical articles about statins fail to point out that alternatives are available.
Ralph Gartenberg, Pinner, Middlesex
I was delighted to read the Star Letter from Ted Clark in your Summer 2016 issue of Heart Matters about the benefits he gets from his electrically assisted cycle. I am also a keen tricycle rider, though mine is manually powered, as the local area is quite flat and a motor isn’t necessary. I no longer have the balance for a bike, but I love my trike, which is so much easier for me to ride.
I have written many, many letters to publications about the health benefits of riding a tricycle for those who cannot handle a bike. Sadly not a single one has been published (although I’ve had many published on other topics). It does seem as if people are embarrassed to mention trikes when it comes to cycling. They aren’t just for cranks or children, but are a wonderfully safe and stable form of transport. I’ve developed severe arthritis in my hip and my trike is my lifeline.
It does seem as if people are embarrassed to mention trikes when it comes to cycling. They aren’t just for cranks or children, but are a wonderfully safe and stable form of transport.
My weekly shopping comes home on the back of my trike, and I use it for all my local errands and visits. My nearest bus stop is too far for me to walk to easily, so it’s a no-brainer. It gives me my much needed daily exercise.
Every week when I am out and about someone asks me about my trike and where they can buy one, but very few actually seem to follow this through. I’m one of just three ‘trikists’ in my town. They really do deserve to be more popular.
Thanks for a great magazine.
Andrea McCulloch, Newton Aycliffe, County Durham
I've been given a second chance
In July 2007, aged 55, I received coronary artery bypass grafting to bypass two completely blocked arteries. Seven weeks earlier I didn’t feel unwell, but thought that five days of heartburn was unusual, so went off to the doctor who organised a treadmill test and was referred for an angiogram. The consultant calmly informed me that I needed a twin (possibly triple) bypass by open heart surgery. All went well thanks to the amazing team. The recovery plan followed and I was back to work after 12 weeks.
What I’d like to say is: don’t feel afraid to try things after your operations. Keep your spirits high and surround yourself with people who will give you a boost. Finally, when you wake up every day, be grateful that you’ve been given a second chance.
Don’t feel afraid to try things after your operations. Keep your spirits high and surround yourself with people who will give you a boost.
I slowly ventured back into exercise with football, swimming and walking, then as the years went by and I felt so lucky, I started bigger tasks. These included walking the Birmingham Half Marathon with my son, being the support driver for a team undertaking the three peaks challenge in 24 hours, and this last weekend I was the support driver for my son and his mates for the coast to coast cycle route.
Keep up the good work and research, Heart Matters and BHF.
Graham Skinner, Ulverston, Cumbria
Learning from my parents
My grandfather and father had long-term heart problems. Neither was physically active, both smoked and enjoyed a stodgy east European diet. They died from heart problems even though they had heart bypass surgery and support from GPs.
I decided to learn from their experiences and changed my lifestyle about 15 years ago. I had stopped smoking years before and now changed my diet to be more Mediterranean, and also started to walk more and bought another bicycle.
I recently had a health check-up, as I retired. I was delighted to be told that, although I am now 67 years old, my heart is aged about 50 condition-wise! There are many ways to learn from your parents’ example!
Philip Silverton, Harrow
Jack Chisnall mentioned in his inspiring article (Summer 2016, page 14) that he breaks a lot of glassware due to problems with his hands. I have found using colourful plastic picnic dishes very helpful.
I am nearly 78 years old, and was born in 1938 as a very sick baby. The doctor kept telling my mum that I had asthma. I did not attend school very often and this illness went on until I was about 11 years old. Then for three years I was able to be like other girls, taking part in all the activities in school. It did not last long though. When I was 14 years old I could hardly walk or breathe properly.
I had the operation that saved my life...and I was able to have two daughters.
I was due to leave school in 1953, so we all had to see the school doctor, who detected something was wrong. For the next two months, I was going through lots of tests to determine what was wrong with me. After my mother gave the doctors all the medical information, they informed us that I had a hole in the heart! I had been born with it.
On 6 May 1953 I had the operation that saved my life. I am still here in 2016, and I was able to have two daughters. My mother was a lovely lady and naturally determined to keep me alive. I am so grateful to her, for all she did for me.
Marion Hobbins, Prestatyn, Denbighshire
I receive Heart Matters regularly and the information is always very much of interest. In the Summer issue, I found the article about Dr Moggridge’s work on heart valve research exciting and most interesting. His photograph shows a young man, confident in what he is doing – very calm and, I’m sure, a great team leader. Super!
Mrs Irene Latham, Holland-on-Sea, Essex
I have been receiving your magazine for several years now, following my father’s death from a massive heart attack.
Yesterday I had an angiogram and received the news that I will need a stent shortly. I can’t tell you enough how useful and interesting I have found the magazines. With careful eating and exercise I have reduced my cholesterol, from 6.7 to 5.1, and my weight. I will soon be on statins, which I am somewhat wary of, but the thought of resuming hiking (I am 70 by the way) without discomfort means I can also consider volunteering for the BHF.
I have not been able to donate money so I donate clothing, bric-a-brac (even TVs) and furniture as often as I can. Thank you again for all the helpful advice which I am able to pass on to my family too.
Elaine Andrews, Corfe Castle, Dorset
Thanks for making me feel good about my heart surgery scar
Thank you for the article that changed my life (Mark of strength). I had a replacement of one of my heart valves, with the best treatment at my local NHS hospital. I was very conscious of my scar, as my youngest son was getting married. It took a chaotic few months to find my outfit; as mother of the groom it had to be right.
I was still thinking about my scar until in Heart Matters there were three fabulous ladies all thinking the same as me about their scars. After reading the article, I immediately altered my ideas. The day went to plan and a brilliant time was had by all.
My weight is my next thing to tackle. I’ve just seen the eatwell plate, which will help me.
I love Heart Matters; it always gives me a boost. Just remember – wrinkles mean you laughed, grey hair means you cared, and scars mean you lived. Keep smiling.
Linda Plews, Atwick, Yorkshire
Back on a bike - at 98
I’m writing to tell you about my mother, Gladys Grimstead, who at the age of 98 is still enjoying new challenges. A couple of years ago you were kind enough to feature her on the cover of Heart Matters with an article on her love of t’ai chi.
Lately she has joined a local group called Wheels for All, which provides adapted bikes for anyone with limited mobility, from age-related loss of balance to very severe disabilities.
From the age of six, Mum always had a bicycle and was very unhappy when, at 92 years old, it was decided that it was no longer safe for her to continue riding.
With Wheels for All she is delighted to be able to take up her favourite activity again and happily rides around the local park on a bright red tricycle. She is getting faster and more adventurous every week.
It goes to show that exercise and new projects can be the secret to a long and happy life.
Gill Stallard, Portsmouth, Hampshire
Help and support
I had a real wake-up call as a 53-year-old, overweight woman with high blood pressure. I thought I could ‘get away with it’ as I’m so busy at work or am commuting.
However, having tried to come off my blood pressure medication (you should only do this with your doctor’s supervision), then my blood pressure rising to scary heights and feeling as though a heart attack was imminent, I realised I needed to take urgent action.
Dad gave me your magazine. I now see that I am not alone
That’s when dad gave me your magazine. I now see that I am not alone and that there are many similar stories out there, plus plenty of help and support.
My recent shock, coupled with your excellent Jan/Feb 2016 magazine, has given me the impetus to really make a change this year, to lose two stone and to get back into sport.
In the 80s and 90s I was a total gym-bunny, took dance classes and have always played tennis on and off, so I’m not sure how I find myself here – perhaps other middle-aged women feel the same way.
My first step will be a game of tennis with my dad, who’s fitter than me at 80. He still plays every week – a good role model, I feel!
Cheryl Gaydon Chilton, Worthing, West Sussex
Guy Heywood was only 29 when he was diagnosed with a heart valve problem. He was told he needed a new heart valve and had to make a big decision. He could choose a tissue valve or a mechanical valve, which would last longer but would require him to be on warfarin for the rest of his life. You shared your support on Facebook.
- My son was 22 when he had to make the same decision. He was a football coach so he decided to go with tissue. His story is so similar to yours. He also only has two flaps instead of three. He is three years down the line now and doing fine. Hope you’re well, Guy! Sue Allen
- This is exactly the same diagnosis my husband had four years ago at the age of 46, and he also chose the tissue valve. He has been fighting fit ever since, on no medication and we will both be doing the BHF Hadrian’s Wall Hike this year. Debbie Harris
- My husband had his aortic valve replaced, but he wasn’t given a choice. He has a mechanical valve and is doing fabulously! Taking warfarin every day for the rest of his life is a small price to pay. Donna Fieldhouse
, our Winter 2016/17 cover star, is the youngest person in the UK to get a left ventricular assist device
(LVAD). He plugs himself in every night to survive. You shared your support for Jim on Facebook:
- I've had this. My LVAD was a lot bulkier than yours. Was hoping for my heart to recover but never did so I had my transplant at Harefield in August 2007. Chin up, you can get through this. Lisa Louise
- So nice to read this, my son is 16 with this condition and he hasn't been too good lately. I'm so negative and this made me feel better. There is hope. I wish you well and all the best, it's so not easy. Anne Julie
- Keep fighting Jim! I have a CRT biventricular ICD that will shock me if needed - which I have due to suffering a massive heart attack followed by four cardiac arrests, arriving at hospital clinically dead. You're doing an amazing job there fella and an amazing attitude after going through as much as you have so far, keep it up. Onwards and upwards. Aidan Richardson
- My son developed virally induced dilated cardiomyopathy and he too had an LVAD. He had a hugely successful transplant just over three years ago. Keep positive and trust in the genius of your transplant team and the support of your family and friends. Somewhere there will be a family with the courage and kindness to gift you a heart. Fraser Britton
We also shared Claire Marie Berouche's story, who had a heart attack and was later diagnosed with heart failure. She went from being a busy customer service manager to struggling to stand up for too long. But she is learning to live with, and accept, "the new Claire". You said:
- I'm 55 and I've just been diagnosed with hypertrophic cardiomyopathy... trying to cope and understand... this is great inspiration. Fi Elizabeth Lipscomb
- Well done Claire, I had a sudden cardiac arrest at 34, still looking forward to seeing every new day. Eileen Young
- I was diagnosed at 46 with heart failure. My life ended when I found out, or so I thought. You begin to know your limitations and can get back to taking your favourite walks, just that bit slower and have more rests. When you need to sleep, go to sleep, don't fight it. You learn to live again, just in a different way. Tracy Barron
- Well done Claire, thank you for sharing your story xx Heather Terry