Got a text today to ring my GP surgery. Having had a stress MRI 2 weeks ago my heart sank a bit (forgive the pun) as generally if all is well you hear nothing.
They got the practice manager to speak to me as the MRI report had landed and it had confused all of them! The GP had asked them to contact me.
The first confusing thing is at the bottom of the report it says ‘breast clinic referral’. I had a lump checked at Addenbrookes in August and nothing amiss. The cardiac MRI was under a completely different Trust, and I didn’t mention the August investigations.
I asked the Practice Manager to read the report to me (like many of you, my knowledge of cardiology terms far exceeds those who haven’t been where we’ve been and I knew I would get a sense of it. She mentioned Preserved Ejection Function, and then dissembled a bit, and said she would get the GP to call me on Monday. She said the GP didn't seem worried in the notes.
I stupidly googled preserved ejection fraction. Then preserved ejection fraction normal. I’m in bloody heart failure. That’s how it reads. Dear BHF mates, tell me I’m wrong. I know that HF isn’t a death sentence, but good God, I’m on the brink of taking on my normal responsibilities at work, going through some horrific stuff with my DH’s job and right now, sat here with my girls, husband and dog I feel very scared and very lonely. I can’t tell anyone any of it - they all worry too much as it is.
Hand holds and calm downs please.
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Sillyfroggy
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Oh god why are some GPs so rubbish at giving their patients results! Those of us with a heart condition are probably better informed on these matters than most GPs, so while Preserved Ejection Function would mean diddly squat to most people , us with a heart issue would frequently know quite a lot about the subject.
First of all - don't panic (to quote the Hitchhikers Guide to the Galaxy) Heart Failure sounds like a terrible terminal condition, it's a horrible term, I prefer to call it Impaired Heart Function, and it is not as bad as it may sound.
Here's a link on the subject of Ejection Fraction will may help to explain it better:-
There are a lot of people on this forum with heart failure, some of which have lived full lives for 20 years or more with the condition
Have a read through the enclosed links then have a chat with your GP next week (I'd also suggest you discuss the total lack of empathy when dissembling details following tests, but I'll leave that one to you!)
Good luck, and try to chill out, it really isn't as bad as it sounds!😊
Don't panic. I would doubt the practice manager has any medical knowledge and didn't expect to be speaking to someone who would know what she was talking about. (does that make any sense?) anyway, in what context was preserved EF mentioned? Did she actually say you have HF? Totally understand the googling bit, I did it myself when husband was diagnosed with HF, but all I did was scare myself. HF is definitely not a death sentence, people live with it for years & live perfectly normal lifes. As spiritofthefloyd has said it simply means your heart needs a bit of help pumping, there's probably thousands of people who have it but are not aware as it's not affecting them or they have no symptoms.
I googled kevins eGFR blood results and practically had him on the kidney transplant list only to find out he doesn't have kidney disease, no more googling!!
Hi, I want to sympathise and offer some words of support but the first thing that comes out is “aargh” , which isn’t really at all helpful! A common sense approach may be for the GP to say “ we’ve got your results, please make an appointment so we can review them together and in the meantime, don’t worry”. But it doesn’t seem to happen like that. My husband has a heart condition and once had a call from the hospital to “pop in and see the consultant who will be fitting your ICD next week” Erm, what ICD? Why? Will this person be discussing the pros and cons with me - no, just about fitting it. So who will discuss this with me - er... (He didn’t have an ICD then and now doesn’t qualify for one as his condition has improved. )
I know it’s easy for me to say and hard to do, but please don’t worry until you’ve seen the GP because you don’t know there’s anything to worry about. It’s all got to be taken in context and the odd phrase like “preserved Ejection Fraction” doesn’t tell the whole story. If you can’t get an appointment quickly, perhaps ask if you can pop in and collect a copy of the letter then ring the BHF nurses to talk it through. Then you’ll also have some informed questions to ask your GP too.
Hi I also had a shock feeling well for 3yrs after heart attack did echocardiogram cardiologist didn’t give me any reassurance only straight out say need pacemaker or bypass I almost passed out leaving the clinic numb and clueless made apt with gp none the wiser and all I can say is anxiety upon anxiety now I have apt for a mri I really am a nervous wreck oh they only mentioned ef 35%
His meds had been settled for some time. There were 2 big changes. Firstly his Aortic Valve was replaced as it had been damaged by his condition and was no longer working properly but that hadn’t changed his EF when checking by an Echo about 8 months afterwards. The big change came after the source of his stress and high BP was removed - he retired from work. And a few months later his EF was massively improved. Fingers crossed it stays like this.
Our practice manager is absolutely lovely, and I think I bullied her into reading it out. Almost as soon as she started reading she said ‘it’s all too complicated, I will get Dr ... to call you’ she’d read out Preserved ejection fraction and then said I need to ask the gp. I asked did it have a % (my previous ef was fine) and she just repeated the preserved ef thing which I thought was good and said so! She then worked to end the call, reiterating GP. She didn’t mention HF, so maybe I’m barking up the wrong tree?
What other ways is this phrase used? Is it used in a neutral, or good way? I’m so annoyed with myself I ignored the text until it was too late to speak to my doc!!!
You will bark up every tree in sight and probably pee on them too until these results are explained by your GP.
I jumped to all sorts of conclusions re my husbands bloods and echos only to be reassured by very experienced consultant so do ask to see your cardiologist asap ( which I realise may take long weeks, it does round here)
Mind you if cons ordered MRI might be quicker.
You are the same person with the same situation you were before the result. All that has changed is you have more information which definitely needs interpretation by a professional.
My heart failure nurse has stated preserved ejection fraction on a heart MRI can also mean a normal ejection fraction. There is a page of other medical measurements that will determine if you’re in heart failure. We hear heart failure with reduced ejection fraction as the “better” heart failure to get?!
A cardiologist or a heart failure nurse should be going through the report and deciphering it for you and delivering you the results. If they don’t understand it and you don’t have a cardiologist or heart failure nurse I’d ask the gp to refer the MRI to be given in a cardiology outpatient clinic.
Take a deep breath.
I’ve had 2 heart MRIs this last year. My ef read preserved on the last one. But I am now out of heart failure and got told off by heart failure nurse for googling terms that didn’t apply to me and my condition.
Hi I was diagnosed with heart failure and angina and was in utter shock as I was been treated for a chest infection! After seeing a different doctor and having numerous tests I discovered I had also had a heart attack a few years back again we thought I was unwell with a chest infection huge huge shock! . I was worrying myself sick which doesn't help but once I was on the right medication I just kind of got on with it but I have just had a defibrillator fitted as a back up in case anything untoward happens in the future again I was worrying do I really need it the answer I came up with was yes i had my device fitted Thursday of this week ,all this has happened since dec 2018. Try not to worry I know it's easier said than done but they will sort you out and if you have a heart failure nurse half as good as mine you will be fine. She told me to look at it as my heart just wasnt doing its job as well as it could as heart failure sounds very frightening. I hope all goes well and fingers crossed for you xx
Really sorry to hear how your feeling, when I was feeling really bad I wouldn't tell anyone how I really felt. Hope its better news when the doctor speaks to you. Sending hugs x Sheena
When my mum was expecting me in her 20s she developed toxaemia which went into full blown eclampsia and organ failure. They saved her but it damaged her heart and she was told she had heart failure. In the late 40s just before the NHS you were told nothing, no tests were done and she wasn't given any medication. She was simply told she must never have an anaesthetic. Apart from getting breathless on slight inclines she lived a perfectly normal life; got pregnant again ( and lost that baby again due to toxaemia); had a hip replacement by epidural but she carried on for another 50 years. I could never understand why she wasn't under a cardiologist but she never spoke about it and probably didn't even tell her GP
Thankfully there is greater understanding of how pre eclampsia can have long term effects on women later in their lives.
There is more research and better care now given.
It is rare for a woman to have an eclamptic fit these days as their Blood pressure and other complcations such as clotting disorders are detected quickly and treated much better.
The baby can be delivered much earlier due to the advances in the care for premature babies.
This for me this demontrates how medical research truly improves peoples' lives
Indeed here is. I wouldn't be here without it as I had quite severe toxaemia and my son had to be delivered by C section at 31 weeks. and I was kept in an induced coma for a week while trying to get my BP down. Mum's sister died from eclampsia. A nice ending though, as having searched for her baby for 50 years I finally found him 2 years ago.
How strange - I had pre eclampsia with my first baby. Effects on the heart weren’t even mentioned.
Thanks for all the messages. Using a bit of retail therapy as a distraction. Will see what Monday brings. It’s all meaningless until the doc says it isn’t, right?!
Good morning Sillyfroggy,hope by now you might have had some more positive and reassuring news.As you so rightly say,HF is no big deal and you don`t even know if it is that.I`ve had HF for 10 years now,pacemaker for 8 and really apart from slowing down a little,which could be partly due to old age creeping up on me,I lead a normal life and the fact that we have all these health issues pushes us to keep fit and look after ourselves more than the average person.Please keep us informed and hopefully good news and a happy Sillyfroggy.Lots of love xxx
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