Guest post: Women's hearts - 'heart failure never entered my mind: to me, it was an old man's disease'

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I started feeling ill in the summer of 2008. I didn't know it at the time, but I was displaying some of the classic signs of heart failure: fluid retention, shortness of breath, and lack of energy.

The first few times I went to the doctors', my symptoms were brushed off as ‘stress’. After all, said the doctor, I was ‘too young’ to be suffering from anything nefarious, like lung cancer - which I feared due to the alarming difficulty I had breathing, and my family history.

I was a 48-year-old mum-of-four, so stress seemed like a logical explanation, and (although not for much longer) I still had that ‘doctor's always right’ assumption – of course she knew my body better than me, didn't she?

Weeks went by. A test for asthma showed that my lungs worked fine, but my blood test results were abnormal. Perhaps I was drinking too much? (I wasn't) How about gout? Or hepatitis? They seemed to be the only other options being considered during subsequent trips to the doctor. After all, I wasn't overweight, I hadn't smoked in years and I looked healthy. I knew they were wrong, I just didn't know why.

I was admitted to hospital in the autumn of that year, after my husband called the paramedics when I collapsed trying to walk across the room. I was put on the general ward and told by the consultant that I would be home the next day, because it was ‘probably stress’. Blimey, I thought, could it really be stress making me feel this ill? Perhaps I was overreacting... who would trust my word over the consultant's?

But they were wrong. On day five, after persistently abnormal blood test results, an x-ray, and a doctor finally listening to my heart, I was diagnosed with heart failure – cardiomyopathy, to be precise.

Heart failure had never entered my mind: to me, it was an old man's disease. I wasn't even out of my forties, and I had always been in good health. Doctors had attributed my symptoms to ‘lifestyle choices’ because I was a busy mum, and nothing like your ‘typical’ heart patient (i.e. an overweight man). I've learnt now, though, there's no such thing as a ‘typical’ patient.

Since my diagnosis, I've been through many ups and downs. I suffered a cardiac arrest in 2010 while having breakfast at Borough Market with my family. My heart stopped beating and I was only saved because two (brilliant) paramedics had stopped for coffee 200 yards down the road. Consequently, I was fitted with a pacemaker and an internal defibrillator, to keep my heart beating regularly and shock my heart in case I had another arrest.

My heart never regained full function, meaning I couldn't walk very far and had to use a wheelchair when I went out, and my memory's been a bit fuzzy since the cardiac arrest, so when I started to deteriorate again in Spring 2011, I was diagnosed as being ‘stressed and depressed’ because of the change in my lifestyle. It was all horribly familiar.

I was admitted to hospital again the day after my son's birthday. I was yellow because my liver and kidneys were failing. I felt like I was dying, which I was. And yet it still felt like the doctors thought I was overreacting, and that my concerns weren't being taken seriously because I didn't look ‘that ill’. I had to fight tooth and nail to be given the correct medication, and on time. I had doctors looking at incorrect test results and telling me I would be fine, only to be told half an hour later, upon inspection of the correct results, that my heart function had deteriorated to the point where a heart transplant was the only option.

Unfortunately, although I am an ideal transplant recipient in most respects (height, weight, blood type), I have very high antibody levels, which means that I am only compatible with around 2% of otherwise suitable donors. Antibodies can be created during pregnancy and after blood transfusions, and I've had several of both. As of yet, there has not been a successful heart transplant with antibodies as high as mine.

My only option was an LVAD (Left Ventricle Assist Device), a small machine that is attached to my heart and helps it pump the blood around my body, taking some of the strain. It's powered by a battery pack that is attached by a wire that pokes through my tummy. It can feel heavy and I notice it a lot (my kids tell me I'm being paranoid!), but it's given me a lot of my independence back and it means I'm still around to see my family grow up.

I can't say for sure whether my life would be any different had my GP listened to my heart instead of focusing on the illnesses I 'couldn't' have had. But I would say this: if you ever feel worried that something isn't right, please don't be afraid to demand the tests you need. Us women – and particularly mothers – tend to just “get on with it” and cope, but if there's a feeling you can't shake, you must demand that people listen to you.

If you're interested in becoming an organ donor, you can find out more and register here.

That sounds really tough. I'm glad you've got the LVAD (and that such a thing exists).

My son has a complex congenital heart defect. He may need a transplant one day.

My Mother died from this disease...after being diagnosed as having a chest infection and given steroids and ABX. All the signs were there.

My Mum died during her 4th heart operation to try and give her some quality of life, she was 49 and had her first 'cardiac event' in her late 20's.
Definitely not an old persons disease.
I hope soon that the UK will adopt a standard opt out system for organ donation.

Janet, I'm so sorry to hear about what you've been through. My husband (aged 50) has had a similar experience to you - he went to the doctor last summer with difficulty breathing and a nasty cough and was given antibiotics for a chest infection. It didn't clear up and 2 months down the line ,after several more visits and his symptoms being put down to bronchitis,'a virus' or possible pneumonia ,his doctor arranged blood tests and an ECG (performed by a grumpy nurse who gave the impression he was a time waster).
The results did seem to indicate some sort of heart problem - but even then ,even though he could barely walk to our local shop,had been sleeping in a chair at night and was coughing up weird pink lumps - it was not considered an emergency.
In the end I talked to a friend who's a doctor - she immediately recognised heart failure and said he should go to A+E. He was so ill (dilated cardiomyopathy) they thought an ambulance had taken him in - he wasn't even allowed to go to the toilet alone. After 2 weeks in hospital & having a pacemaker/defibrillator fitted he came home. Like you said, all along his symptoms were overlooked because he did not fit the 'typical' heart failure patient type, being relatively young, fit and non-smoker. It seems like the GP was looking for textbook symptoms ,such as swollen ankles, which he never had.He is planning to hold a meeting with the GPs at his surgery so that they may learn from his experiences.
The outlook isn't great because his heart function has not improved. He may need a transplant at some point.
I, too, wonder whether things would have been different had the illness been spotted sooner .All the best to you and you family x

It's sadly familiar to me. My dd also has complex heart disease and pre-diagnosis her heart failure was dismissed as minor illnesses, anaemia, a UTI, a chest infection, yet after diagnosis it was clear that she ticked every box for congestive heart failure in a baby but no-one considered it. She had an ejection fraction of just 9% the day she was diagnosed.

Always trust your instincts.

Hope you get the gift of a heart someday soon Janet.

Anything we can do to avoid this happening?

I'm strangely pleased that you wrote about your experiences.

I work with VAD patients and I would say that the majority are woman in there 30/40's.

And quite often it's pregnancy related. (Ie not diagnosed until far along in pregnancy or postpartum).

I'm not a doctor but education and thinking outside the box is key I feel. An ecg takes minutes to perform (listening to heart sound even quicker). And so much information can be gleaned.

But I'm getting on my soap box.

Thank you for sharing your story Janet.

Janet. My husband had DCM at 22 years old. listed for transplant at 25. LVAD and ICD by age 26. transplanted at age 28.

He is now 36.

Heart failure can affect anyone .

Like you my Dr told me I was too young for anything serious (I was 42) and the fact I couldn't breath after walking up stairs, heart palpitating in my chest and tingling in my arms was all down to stress.
2 days later I suffered three heart attacks over a period of 24 hours. The first two i put down to really bad indigestion, the third one I collapsed and had to be blue lighted to hospital.

I suffered long lasting damage to my heart, have 5 stents and still suffer problems.

ECG's don't always pick up heart problems though, a tilt test or testing the heart under duress is better.
I have always had trouble with fainting, low blood pressure and tingling extremities. I had a bad faint when I passed out completely over lunch and my friend slapping me hard didn't rouse me - I had to be laid flat. A few days later my GP did an ECG and nothing but low blood pressure found.
3 years later and I've had 4 more faints/blackouts (thankfully much milder but very scary all the same), plus a terrible 3 hour heart arrhythmia while I was lying in bed feeling my heart was going to pop out of my chest trying to calm down because I was sure I was making it worse by worrying) and loosing sensation in my fingers and toes, pins and needles waking me in the night and I still haven't had the heart tracker my GP promised me 6 months ago. It took a lot to go in there and make a fuss and now, after he seemed so concerned at the time, the thought of having to go back in is embarrassing and I feel I am wasting their time because they surely would have chased this if it was a matter of life or death? He did bloods and apparently they came back fine, but I then saw the nurse who said I shouldn't be on the contraception he had put me on with my bloods - which I then stopped. She went to great lengths to say she shouldn't really go against the GP but felt she had to mention it. She seemed to be going on my hormone levels - are these connected? I've since thought it could be perimenopause signs but that seems even harder to go and ask my GP about as I am only 33!
If anyone can advise I would be grateful. A heart checker drop in van outside the supermarket would be something I'd love to see! Do they exist?

Lion go back & see another gp in your practice or move to another practice. Your health is too important & gp's don't chase you - you need to be proactive. I imagine most of us wouldn't accept that level of care for our dc's. my dad was messed around for ages with a persistent cough, saw a different gp one time & she referred him on for a diagnosis of lung cancer. It's not the only instance I know of. It's hard to do it for yourself but you need to! Good luck xx

Lion www.c-r-y.org.uk/cardiac-screening/ offer mobile cardiac screening but really you shouldn't wait. If you are concerned then do as the blog post suggests and trust your instincts. Go back to the gp, ask again for the 7 day ecg monitor, and ask more questions, dont be afraid of sounding silly. No question is unreasonable. Ask what is in your bloods that suggests you shouldn't be on that particular contraceptive. It's probably a perfectly simple explanation but the point is no-one has explained it properly to. Don't be fobbed off. Good luck.

I have HOCM hypertrophic cardiomyopathy. I was diagnosed aged 35 after being told I was anxious because I have other health issues. Because of teh medication for my renal problems there is no way of telling whether it is genetic or just a random mutation. Atm I am reasonably well on medication Disopyramide.

I' m very sorry to hear about your Heart Failure serious condition. This illness has several degrees of severity and you have been dealt a very unfair deal through no fault of yours. My husband has heart failure( he is 66 now) was properly diagnosed 3 years ago but was coughing midly 3 or 4 months a a time every morning. I knew notjing about heart diseases until he was diagnosed with this condition. I learnt quickly! yes he was a smoker... during some routine blood tests he did mention his cough and his GP did tests for his lungs as a measure of precaution as his brother died of lung cancer. They found water on his lungs,. he has been lucky he does not suffer from oedema on his legs or ankles. He is well controlled with various medication. I wish for you to manage to find a heart donor soon. Best wishes.