Saw cardiologist in March. He asked me who told me I had heart failure, I told him he had told me five years ago and yearly ever since. I saw him before my valve replacement. He said he wasn't sure I had heart failure. Sent for battery of tests and then got letter saying I have heart failure with preserved ejection fraction
Increased my Frusemide to 40mg and started me on Empagliflozin.
Empagliflozin is a diabetic drug and I am not diabetic. Pharmacist tells me to carry some sort of sugar with me as I may have bouts of hypoglycemia.
GP no help and no further appointments.
Feel a bit adrift. I am 77 and realise I can't live for ever but really feel abandoned
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Nanny72
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Bless you no wonder you are feeling like you do I would be to
You did make me smile when you said he asked you who had told you that you had heart failure and you said you have the last 5 years I was wondering what his reaction was to that reply
Heart failure though seems such a frightening word I have had my Bypasses done now and I am still classed as having heart failure but they use the term for all with heart conditions even though I know a lot of Doctors don't agree with the term used so freely
It is a shame you did not ask why you needed to go on a diabetic drug but I know a few diabetic drugs are good at protecting the heart to so maybe that could be the reason ?
Make sure though you have something with you as he said you may not need it but they tell everyone that just in case
I am sorry you feel abandoned but you have everyone here to come and talk to we will not abandon you and will always be here to listen
Can I ask who said heart failure is used as a term for all heart conditions? I have never heard that before & I don't think it's correct. I believe you're only classed as having HF if your ejection faction (EF) is below a certain level (I believe 40 is the usual level) & lots of people have heart conditions but have an EF higher than that. The other type of HF is with a preserved EF, which means people have a normal EF but their heart doesn't fill effectively & therefore cannot pump enough blood around to meet the body's needs.
Brilliant. If you do Facebook at all, the pumping marvellous group also have FB support group for people living with HF, their family & carers. It's an excellent source for help, support & advise & I highly recommend it. Very friendly group
Good idea. A lot of GP's know very little about HF and if they're telling patients incorrect information (and you'd be surprised how often they do that!) then they could potentially be causing a lot of unnecessary panic, not to mention misdiagnosis. You could also mention to your doctor that they can apply to the Pumping Marvellous Foundation for booklets & posters on HF for display around the surgery,I know the charity is desperate for GPs to get on board with education around this condition, symptoms etc. . Most cardiology departments & HF clinics are now handing the Pumping Marvellous literature out to patients so they can recognise symptoms & self monitor.
You could well be correct with GPs knowledge of HF, however, if the GP was to read the attached BHF document, which runs through the various causes, could they misconstrue those causes as HF, just a thought?
Interesting that I only have six causes for my HFrEF, although I'm steadily working through the list 😂.
I'm really sorry it's been a long day 😂 I'm not really sure what you mean about GP's misconstruing those causes, do you mean those causes could also be related to other conditions & not HF? I think there's been a real push on to get GP's to do more NT-proBNP tests, they're relatively cheap to do and can be a first marker for HF (though a high value doesn't necessarily mean you have HF just that further investigation is required) but whilst some are now doing this test the vast majority are just not doing it. Our own GP has absolutely no input with my husband's HF, I'm not even sure he knows what it is 😂 but the surgery has recently taken on a cardiac specialist nurse who was previously did cardiac rehab & was a HF nurse so anything cardiac related is dumped on her! She's really nice though & lovely to deal with.
Ps: you need to stop causes, 6 is more than enough! 😂
A GP should understand what they're reading, but, I was thinking do some read the causes as being Heart Failure, particular as this HFpEF has now been recognised and possibly now a grey area that there coming to grips with. I doubt it, but, you dont really know what they're being told themselves.
My GP has very little impact on my Heart health, they just dish out the meds that the Cardio Team tells them too, and take regular bloods.
I'm guessing they don't read theses things properly. Our gp doesn't even bother to read the letters from my husbands cardiologist! Twice now we've phone up about a change in medication that the cardiologist had written about and it's taken a month for the gp to even open the letter!! Before my husband had a HF nurse we struggled to even get his bloods done (still do occasionally) on one occasion one gp arranged the bloods appt and another Dr cancelled it but no one knew why! Last year the surgery sent out a letter telling my husband all the side effects of the medication he was on for his diabetes! My husband doesn't have and has never had diabetes, he's taking dapagliflozin for his HF. When he pointed this out to the Dr, she took the letter crossed out diabetes, wrote in HF & gave the letter back, he was instantly cured of diabetes 😂😂
I seem to be lucky with my GP. Thats ridiculous with the non-diabetes.
Change in meds by the Cardio Team are acted on quickly, and I get a text informing me of what I already know. Bloods are taken at 3 month intervals, but, if, I want them done earlier, its agreed that I just need to ring and ask.
Oh definitely if you've got a good gp then hang on to him/her. Our surgery has just come out of special measure with the warning 'improvement still required!' They've recently taken on a new nurse practitioner, a cardiac specialist nurse & 2 paramedics, so far this has worked well so hopefully it will continue 🤞
I'm definitely no expert on this so would be something to ask your medical team. But anything over 400 (I think it's 400 but I may be wrong, happy for someone to correct me) should be investigated further, a high level doesn't mean you have HF as all sorts of conditions, such as an infection, could cause the level to be elevated. Anything over 2000 (again I'm happy to be corrected if I've got that figure wrong) means you should have referral for investigation within 2-4 weeks. At one point my husbands NT-pro BnP was 600 which was deemed good, it then went up to just under a 1000, his Dr wasn't concerned as whilst that seems a big jump in reality it's not really.Would be interested to know what your Dr says about your level.
he said it was raised and I should talk to the cardiologist I also had an Xray which showed an enlarged heart and I should have an echo. I’m really lucky cause I have a friend who did me an echo and she said it was all good. I will be having a discussion with a cardiologist but he is away for the next 2 weeks
Glad to hear the echo was good. I do know of people who've had an enlarged heart due to a virus and with medication the heart has gone back to normal, I really hope that is the case for you. Good luck 🤞
Hi, I have been told I have heartfailiure and my ef was 47 at the time I was told. I've just had a heart monitor on for a week so I hope I find out more. Yes it does seem like heart failure can be diagnosed with ef different levels. I hope you feel OK on the diabetic treatment .
That's interesting, do you have a rogue cardiologist 😂 until recently you wasn't considered to have HF unless your EF was below 46, 40 now seems to be the cut off figure. Was your EF calculated after an echo or MRI? An echo has an error margin of 5% (some say even 10%!) either way, a MRI is more accurate but even that isnt an exact measurements. It may be with symptoms etc your cardiologist has decided you meet diagnosis. Maybe something to ask about? Have you been put on any meds yet or are they waiting for the results of the heart monitor first? If you have a HF diagnosis your cardiologist should refer you to the HF nurses, if they're available in your area, they will support & monitor you, adjust meds etc until your condition is stable. Ensure you ask you cardiologist/Dr about them as they're often not mentioned. Unfortunately, they're not available for people who have HFpEF, I don't know why other than this condition not really being understood as much as HFrEF, which seems very unfair!
It's not me who has HF it's my husband, unfortunately he has a complicated medical history but yes, when he first went in dapagliflozin he noticed a massive increase in his energy levels.
Thanks for your reply. Yes I had an echocardiogram with dye. I have been put on ramipril and I am waiting for an mri scan. My blood pressure shows hypertension. I am still in the process of tests so hopefully things will become clearer🤞🤞🤞
Good luck, I hope the tests go well for you. I also hope the ramipril helps with your BP. Just so you know, ramipril can cause a cough for some people, I'm only telling you as I don't want you to worry if that does start happening. Usually the cough will clear after a while but do let your medical team know about it as there are other meds they can use instead, if necessary. My husband did really well on candesartan for years after they took him of lisinopril because if his cough.
Thanks, I have had a cough since I got covid 13 months ago but it is a bit worse since starting ramipril . I will keep an eye on it . Thanks for avice .
Correct I have HF with preserved EF of 55 I'm on the same drug called also by the name Jardiance which has a few unwanted side affects do uou have any issues with this drug I'm also not diabetic.
It's not funded in NZ but I get it anyway.
Mine was found after a angiogram of the left and right side of the heart the left side not performing well stiff ventricles.
Hi, I'm really sorry but I'm confused, what's not correct? If you look back through all my comments you've just said exactly what I've said, that HFpEF has a normal EF & that empagliflozin has recently been licensed by NICE for the treatment of HFpEF in the UK. You & I have talked about this not so long ago, I do remember you saying it wasn't yet licenced in NZ but you had been prescribed it. The comment you're replying to is regarding HFrEF, which is heart failure with reduced EF. A normal EF, in the UK is considered between 50 & 70, so 47 is below normal & so is slightly reduced.
That was a mistake im sorry it should have said Correct I don't know where the Not came from just a typo. How are you getting on with empagliflozin any side affects someone on another site I'm on private messaged me with their own personal experience and it did worry me for a while bit I want to give empagliflozin a chance to improve my breathing
My phone does random things like that as well, even when I've corrected the text it changes it again! I don't have HF it's my husband who takes the dapagliflozin (it works in the same way as empagliflozin). He's been on dapagliflozin for over a year and apart from some weight loss he's had no side effects whatsoever. When he first went on it he said he almost immediately felt it made a difference in his energy levels, he hadn't realised how slow he'd become until he started it. Unfortunately his health has become more complex this year, due to various issues, so it's difficult to say how much it's helping him at the moment as he's been on & off most of his heart meds for quite long periods this year.
How long have you been taking it & have you seen any improvement in your breathing at all?
I’m sorry to hear about your GP experience with your diagnosis of heart failure. I’m also sorry to hear you feel abandoned by your healthcare providers.
I’ve also had many negative experiences throughout my medical care journey, receiving care from GPs and cardiologists who haven’t always been empathetic unfortunately.
In regards to your heart failure, it’s a scary term but it isn’t as awful as it sounds. You mention that you had heart failure for 5 years, which your GP was unsure about until recent tests confirmed this.
Was heart failure updated on your medical records and were you being medicated for this?
Usually taking medication can increase ejection fraction back within its normal range which is somewhere between 50%-70% I believe.
In terms of the Empagliflozin, it can be used in the treatment of heart failure, not just diabetes. I have found the below guidelines published by NICE on using this as a treatment method for chronic heart failure and reduced ejection fraction. Please see below.
I think the confusion is around the type of HF nanny72 has. HF with a preserved EF, known as HFpEF means you have a normal ejection faction. This type of HF is where the heart doesn't fill efficiently and therefore fails to send enough blood to meet the body's needs. There has been little known about this condition until recent years and hasn't been recognised as HF for that long, as a result there has been little in the way of medication to treat it, though it's very much in vogue at the moment.
You're absolutely right about empagliflozin being originally a med for diabetes, it has been licensed by NICE for treatment for this type of HF in the last month or so. Dapagliflozin is the med of choice or HFrEF unless you're also diabetic, in which case empagliflozin is usually prescribed
You certainly do learn something new everyday. Today I learnt about venous insufficiency, now I just need to learn how to distinguish it from fluid retention caused by cardiac issues! Any pointers ? The EP & HF nurse just glossed over it as it's not really their field 😭
I’m glad you mentioned venous insufficiency. It seems to be related to varicose veins? My mum has had massive issues with her varicose veins, random swelling in calves and ankles, extreme pain, and heaviness. I wonder if this is a potential diagnosis for her? The GP doesn’t seem to be bothered by it and says it’s harmless 🤔
That's kind of the impression I'm getting around venous insufficiency, varicose veins etc & was just told to elevate your legs! But, surely if your veins aren't working properly then it needs to be looked at? The EP today said that you can usually tell the difference because with fluid retention due to cardiac issues you'll also retain fluid around your stomach area etc. But, I know lots of people who have fluid retention in their legs only! I will be asking the cardiologist on Friday for a more detailed explanation!
Hmm I’m not sure how accurate that is 🤔 retaining fluid in just your legs is also an indication of a possible cardiac issue too I thought. When I’ve attended the hospital, they always assess my calves for swelling, never really my stomach to see if my heart is causing me any further problems.
Good idea about asking the cardiologist. Let us know how you get on with that!
That's exactly what they do with my husband! I will let you know what the cardiologist says on Fri. But could I just ask a question about your mum's swelling in her ankles/carved? When/if you push the swelling does the mark stay indented for a while?
Yes. If it’s indented, I believe there is fluid retention there, also known as oedema. With the warmer weather coming up, I know her ankles and calves will start to go haywire again and swell up.
Thank you. So (not asking for any medical advice just your opinion) if the swelling is venous insufficiency would it stay indented? That's the bit I'm struggling to get my head round 😭
I want to say that any kind of considerable fluid build up causes indentation, no matter where it is in/on the body. Also, I find that venous insufficiency may overlap with a lot of the symptoms associated with varicose veins and that a like so if becomes difficult to determine between them. Therefore, my personal understanding of it is yes, venous insufficiency does cause indentation. It’s still fluid build up, so I don’t see how it wouldn’t create indentation.
Thank you, thats how I see it as well & that's where my problem lies! Back in January my husband was retaining fluid in his ankles but as it was only minor we didn't do anything about it for about a week as we had the cardiologist appt coming up. The cardiologist very gently told us off & said we're never to ignore fluid retention again regardless of how minor. So if venous insufficiency isn't particularly an issue but has the same symptoms as fluid retention, how am I supposed to know the difference 😭 I'll let you know what the cardiologist says 😂
This is the problem, how do you differentiate between oedema and venous insufficiency when they practically have the same symptoms 😂. Yes, do let me know what your cardiologist thinks. I have a feeling they may also find it difficult to give a definitive answer 😂.
My ejection fraction is 60% so preserved. I have no ankle oedema but I do get very breathless. I am on ramipril, amlodopine, bisoprolol as well as frusemide and empagliflozin. I have had a valve replacement 5 years ago. I am a bit confused.
Your GP is the best person to clear up the confusion. I would recommend writing down all the questions and concerns you may have, making an appointment, and having a thorough discussion. Do you have a cardiologist? Would you feel better having this conversation with them instead? Though I feel it’s the responsibility of both care providers, but the cardiologist will be more informed on your heart condition.
Haven't had a face to face with my gp since Covid. I have seen cardiologist yearly since my valve replacement. He is not good at answering questions. I had two hospital admissions in the last two years, both after phone conversations with gp. Advice given was to go to A&E. Both resulting in 10 day stays one after 8 hour wait and one after 11 hours. I had apparently had two small brain bleeds. Second time they found an abcess on my artificial hip.
So you can see why I don't have a lot of faith in my gp. Although my medication is always altered after they hear from cardiologist.
Had an exercise test and cardiac scan three weeks ago. Letter from cardiologist said results were 35% less than expected. No other information just about the increase in Frusemide and starting Empagliflozin.
Sorry to unload on you all but difficult to discuss this with anyone else.
I was told I should have a Heart Failure nurse but that has never happened.
I can see why you are feeling adrift. That's a lot to take in and not very well explained by the sounds of it. Have you tried speaking to the BHF nurses? They explain things well, in my experience. I have recently been told I have heart failure by the gp. EF was 43% on MRI last year but was higher (53%) on echo so its not 100% clear. And therefore I hear different messages. Gp says definitely heart failure. My cardiologist says it is not heart failure yet. Surgeon explained it the best as asymptomatic or borderline heart failure. The main outcome is I will be starting heart failure meds, whether as precaution or as treatment, and I feel hopeful. I'm 47 so, of course, it's daunting but I feel the meds will help and its possible things might improve from there. I hope that's the case for you too. Keeping yourself as healthy as possible with good lifestyle choices should help the cause too. Wishing you well 🌸
That is just ridiculous!! How can they leave you adrift like this.Stand firm for an appointment with your GP and tell them you need the Dr to talk you through the hospital report and to discuss the medications with you.
Hi, there are 2 types of heart failure (HF) HF with reduced ejection fraction known as HFrEF and heart failure with a preserved ejection fraction, HFpEF which is what you have. Reduced EF means your heart isn't pumping the blood around your body as effectively as it should do. HFpEF means your heart is failing to fill efficiently so it fails to send blood round the body effectively.
It's only in recent years that the preserved ejection fraction has been recognised as HF, which is probably why there's so much confusion around it.
Empagliflozin has only been licensed by NICE for HFpEF in the last month or so. It was originally (and still is) licenced for people with diabetes but it was found to help reduced hospitalisation & reduce mortality for people with HFpEF. It helps to protect the heart & make it work more efficiently.
It feels like you have been abandoned but it's not unusual to be under the care of your GP who will continue to monitor you, your GP should have explained things more clearly to you. The Pumping Marvellous Foundation is the UK's leading patient led charity for HF and there is a wealth of information on their website which will help explain this condition far better than I can, the link is below.
I'm a bit confused as to why the pharmacist said carry some sugar with you, I've never heard of that. You would hope that the pharmacist would know that empagliflozin is now licenced for HFpEF!! I think I would ask the pharmacist to clarify why you need the sugar if you're not diabetic.
Finally, hearing the words Heart Failure is indeed very very scary, however, these days there are a lot of new meds on the market, such as empagliflozin, which not only help to control the condition but also enable you to live a more normal within your limitations.
Hope this is helpful to you, let me know if there's anything else I can help you with. Good luck.
I had read about this recently too. It does sound like Nanny72 is actually on the latest treatment for this particular type of heart failure. I can’t help but wonder if it was a chance finding. For instance, beta blockers shrink strawberry birthmarks (hemangioma) in young children. Apparently that was found by chance when a child with a birthmark needed beta blockers.
From what I understand the dapagliflozin & empagliflozin really was a 'quite by chance' find. Apparently, it was noted that people with diabetes who also had HF had improved HF symptoms, reduced hospitalisation etc when they were given these meds. The results were so impressive that the usual trial time was reduced and they were licenced for HF by NICE a couple of years ago, though as you already know empagliflozin for HFpEF is very recent.
That's really interesting to know about beta blockers and HF. My husbands niece was born with a strawberry mark across half her face & over the years that has completely disappeared, now I wonder if she was put on beta blockers for it.
They do disappear over time anyway. My granddaughter was treated for one as it was near her mouth and interfered with feeding. They also treat if they are near the eyes I think.
Chance findings always seem wonderful, especially if they can go through the trials quickly. I suppose due to the safety already being tested.
Ah, this strawberry mark was pretty much over half her face, almost like the mask from the phantom of the opera. It's amazing that there's absolutely no trace of it at all now.
Good to hear you're still seeing the cardiologist. The GP doesn't get involved with my husband's heart condition either, he's had the same consultant since 2012 so we're very grateful for the consistency. I hope the link I posted is of use to you.
The American Heart Association recently produced a very detailed and updated series of guidelines on various aspects of heart failure... as variously classified. Link here. ahajournals.org/doi/10.1161...
You've had a multitude of replies to go through so I'll keep it short 😊 I'm also 77 with HF and not diabetic. . I've been on Dapagliflozin ever since it was released for. HF patients. It works by excreting sugar into the urine. It's a drug that's been around many years for diabetes but was found to have a beneficial effect on the heart.and is one of the 'four pillars' for HF patients. HTH ❤️
"Empagliflozin can also be used to treat heart failure. It can reduce the risk of your heart getting weaker, and help symptoms such as tiredness." from the NHS website, so that is why he has given it to you. Let's hope your GP has some help later on.
My cardiologist also prescribed Empagliflozin for my heart condition, although it is primarily used to treat diabetes it has been found useful in the treatment of certain heart conditions
Hello Nan 😊 us oldies are feeling a little abandoned aren’t we. Sadly GP system in a lot of areas of the country is sadly lacking now and think we will have to learn to cope in this new world. My cardiologist put me on Dapagliflozin which apparently was designed initially for a diabetic condition but was found like many other drugs to have a good benefit on the heart, so is now being used for us to help preserved what we have. BeKind as always so comfortingly told you we are here for those times when modern life does not echo the days we grew up in. When doctors took the time to get to know you and talk to you like a human being. Some still do, but all to often now it’s only people like us who will give you that arm around the shoulder. Take care x
It may encourage you and others to know that just over a year ago 85 year old my brother was diagnosed with stage 4 heart failure - the most serious stage due to a leaky mitral valve - and has recently been assessed as having improved to stage 1 in response to medication. He still has serious mitral regurgitation but his heart is back in regular rythm & the cardiologist feels this can be managed medically rather than resort to surgery. I am impressed that the standard medication many of you have mentioned can be so effective.
I'm not surprised that you are feeling abandoned! Do make an appointment to discuss your medication with your GP and ask what information they have had from the cardiologist. Emplagliflozin is now used to treat heart failure as well as diabetes but the cardiologist should have explained this to you. If you have a local heart failure nursing team they may be able to help explain things to you too.
hi nanny 72, I am on same meds along with lots of other meds also diagnosed with heart failure, EF 40%, medication is used for diabetes but also now being used for heart failure, been on it for quite a while also frusemide 40mg sometimes 80mg, also have problems with getting the support, my doctor has left and seem to be very difficult getting the help ive needed. It fels very frustrating at times everything seems to have been effected since the virus hit. You are not alone there appears to be lots of support on the site. I hope things work out well for, take care, i undesrstand its not easy sending love x
Sorry to hear that i am only 56 and struggling with the 40 mg i have to take,, even on fluid restriction i go to the toilet a fair bit and makes me real thirsty..
Wow this is terrible! So sorry to hear how you’ve been treated here!
I too have heart failure and have been prescribed Dapagliflozin which is also for diabetes. I am not diabetic, my lipids are totally normal, but my cardiac nurse assures me that some diabetic drugs have also shown an improvement in heart function, so this is probably why you have been prescribed this.
Have you been assigned a cardiac nurse? Mine has been an absolute godsend. I’d certainly look into this.
I was just wondering how you got on with the Empagliflozin, my father also has heart failure with preserved ejection fraction and his kidneys have now gone down hill, he is 74, he take a a beta blocker, but the side effects are awful. Apparently empagliflozin is good for the kidneys too If you have heart failure. So am looking for some reviews/advice on that drug....did it help you at al? Do you not attend a heart failure team? My father has not been referred to the heart failure team and I wonder why? Do they not consider HFPEF to be serious enough to warrant support from the heart failure team?
Hope you are keeping well. You were lucky you were even told by your doctor that you had heart failure, I found out my father had it from his discharge notes from hospital after his heart valve replacement and even then they would barely admit he had it.
I have had no problem with Empagliflozin. I don't know if it is working butI am less breathless. Still struggle with stairs and hills. When I saw the cardiologist last June he sent me for exercise tests which gave me 60% heart function. In his letter he said it was 30% less than he expected and he would see me in five years (obviously if I survive that long). My beta blockers is Bisoprolol and that has awful side effects. I am 78 with well controlled hypertension. I don't smoke or drink. Am not diabetic or overweight so not high risk for heart disease but I have it
Thank you for your reply, my dad has 55% heart function, he is also taking bisoprolol, but the side affects are terrible, it gives him bad raynauds and very tired, I will ask the doctor for Empagliflozin tmw, he has good blood pressure and does not smoke or drink, his heart problems are also genetic.
Please make sure you keep an eye on your kidney function if you have heart failure with preserved ejection fraction, I think 60% heart function is not bad at all for 78 yrs.
Thank you again your advice is very much appreciated!
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