I was taken to hospital with breathing problems a couple of weeks ago which turned out to be stage2 heart failure with AF. After 5 nights I was discharged and am struggling to know what this actually means. I live in East Devon and there doesn't appear to be any follow up. My question is, when will I feel better? My breathing is still poor and I still have a fluttering heart. I'm on beta blockers, anticoagulants and fluid lowering stuff. Is it a question of patience? Apparently my referral to the heart failure hub (50 mile round trip) by an unknown doctor has been rejected anyway - twice. I can't find out why.
Any tips really welcome. How long before I can walk further than a few steps? Living alone I need to get on with things!
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Chrissyfilm
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Sorry to hear of your diagnosis. Anything to do with our health can make us very anxious. My husband has been ‘living’ with the same diagnosis for a few years & is on the same medication as yourself. I think the description of ‘heart failure’ is very misleading & it should be called something different. It means that your heart is not functioning as it should be and doesn’t mean your heart is about to fail! My husband & I both have atrial fibrillation too. We try to keep an active lifestyle, although my husband is waiting for a hip replacement at the moment so that doesn’t help him. It appears that they don’t routinely offer any follow ups, but if you’re concerned, speak to your GP.
Anyway don’t dwell on it too much as it will not help. Stay calm & carry on taking the tablets
Thank you. I don't think it's anxiety but am just wondering when it will settle. It's complicated a bit by my COPD I guess. I just kind of expected to be back to pre episode health by now. I'll try and arrange a call with my GP next week but thank you for your reply 😁
Does that 50 mile round trip to the heart failure hub place you at Exeter or are you looking in the other direction? You might be out of one areas referral criteria but might be a candidate elsewhere.
You seem to be in limbo rather than having a definite medical plan of action.
Yes. It's Exeter. I'm in Seaton. I don't know why my referral has been rejected and nor do I know how to seek help from other hospitals. I do feel in limbo as I'm not sure how well I should be feeling by now. I was hoping for a self help group maybe but there doesn't seem to be anything local at all. Thank you for your reply. I'll write a list for my GPs phone call.
The fact you were kept in for 5 nights should mean they have a proper diagnosis of what was wrong and an idea as to how you need to move forward.
It could mean your problem was considered relatively minor but you need to know that as it would reduce your anxiety.
Hope you get some answers and that might only be forthcoming by a visit to the heart unit, although having said that, if you were in hospital for 5 days, surely they must have found out what was wrong otherwise you wouldn't have been discharged.
Have you seen your medical notes that would have been sent to your GP? What did they find out?
I was given my discharge notes as I left. Differential Diagnosis says A/F/Atrial tachycardia and HFmREF? A letter which was sent separately, and which I found online, went to my GP and said NY stage 2 HF and "referred to HF hub". It's this referral that has been refused. I'm guessing you're right and it's considered minor but I'd still like to know when the symptoms will settle down. Is it normal for the flutter to continue and the breathing be so laboured? I'll update when I've managed to speak to my doctor next Friday
It took a few months for me to begin to feel 'normal'. I have had no feedback regarding any rehab and it has been 7 months, so as I feel okay, I'll just carry on with my meds as they seem to be suiting me. 1.25 mg Bisoprolol, blood thinners, and water tablets .
it is a shock when you get a diagnosis of heart failure with so many questions which often feel unheard. I was in a similar position a few years ago. I found Pumping Marvellous web site a great source of information and support. Although it can’t answer all your questions it is for many of us a valuable source of help and was signpost to other support.
I was eventually offered a heart failure nurse, although for the many these nurses they offer a great support sadly my local service seemed focused only on medication and unable to provide information on exercise, diet, social and future planing. I was offered two sessions before discharge back to GP.
So it’s good you are seeing your GP soon, perhaps take a list of questions hopefully you will soon get an action health back to improving health. Please update us as and when you can.
Thank you so much for replying. I have a phone call booked with my GP next Friday. I really want to know how I should be doing by now. I still have palpitations and am light headed when I stand and breathless when I do anything but it's only been 2 weeks so I'm assuming it will settle and improve? I really feel a bit lost and am hoping for assurance that this is normal 😁
Hi Michele. My heart flutters and bumps all the time since I had the episode and because I had a mastectomy on that side, it's very noticeable. I am lightheaded when I stand and my breath is short and rapidly becomes shorter when I try to move. East Devon, especially my area, has very few health facilities and not much public transport. I'm guessing things have probably not improved much since your mother's time. I'll see how things go but I'm finding it exhausting just trying to sort out what should be happening both physically and medically
Under NICE guidelines when you are diagnosed with heart failure you should be referred to a HF nurse, if they're available in your area. Your HF nurse will check your progress, change meds, arrange blood tests, liaise with cardiology, etc until your condition is stable after which time you will be discharged back to the GP for monitoring. I would contact your GP to ask for a referral.
Additionally your GP or your HF nurse can refer you on to cardiac rehab and then further exercise through your local gym. I would ask why you've been refused cardiac rehab, it could simply be a case of you're not ready for it yet if your condition hasn't yet stabilised, fluttering heart etc.
Thank you. It could well be that we don't have HF nurses in our area. I'll update everyone when I've spoken to my GP. This must happen to a lot of people I guess.
That's does look to be the case if your nearest HF hub is so far away. In addition to speaking to your GP you could phone your local cardiology dept and ask where the HF nurses are based that'll give you something to discuss with your GP.
I've read that your diagnosis is HFmREF, the HF refers to heart failure, the 'm' refers to mild & the REF refers reduced ejection fraction, this is the amount of blood that is ejected from your heart to travel round your body. The NY stage 2 refers to the stage of your HF, there are 4 stages and often people can move backwards & forwards between stages, lots of people with HF improve overtime with the right meds etc. my husband has had HF since 2012 & in that time his HF has gone from moderate/severe to severe to mild, back to moderate/severe & is currently severe, his deterioration is due to cancer treatment amongst other things.
Below is a screenshot I've taken from the pumping marvellous website which explains NY stage 2, I've also posted the link to the pumping marvellous website, which covers everything to need to know & ask about.
AF & atrial tachycardia is quite common with and/or without HF you are probably on meds for this. The lightheadedness is probably due to low blood pressure it does take time to get your meds & dosage right & for your body to adjust, it may be your meds need a bit of tweaking , it's early days for you yet. Meanwhile, buy a good upper arm blood pressure monitor and record your readings for discussion with your Dr & when standing up from sitting do this slowly so as to avoid a sudden dip in your BP which is what causes dizziness. If your blood pressure goes too low, then seek medical advice.
Hope this helps
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NYHA II – Slight limitation of physical activity. Comfortable at rest, but ordinary physical activity results in tiredness, palpitations, or shortness of breath.
Oh that's great. Thank you. It really does help. I know we are stretched for medical services here. I'll get a BP monitor. I really didn't know I could take this to my GP. I thought any problems had to go back to some sort of heart person and that has been the problem. I didn't know who or where.
If you don't a cardiologist/HF nurse then your GP is your first port of call, it's your GP who refers you to cardiology or the HF nurses. When my husband is under the HF nurses his cardiologist writes to the nurses & GP. When he's been discharged from the nurses & is under the care of his GP but the cardiologist wants him re-referred to the nurses he writes GP and asks that they re-refer him etc. So the decision to refer is taken by the GP BUT cardiology/HF nurses can refuse to take you on if there's a good reason for it. Bear in mind though if the cardiology/HF department is busy then that can affect referrals etc.
The dizziness when you stand could be very low BP so take your own blood pressure readings at home and give them to your GP. Hope you get some answers soon x
it seems that many providers of medical care ..have missed out on some basic patient care procedures! We all worry about health ..and after Heart Issues anxiety and stress probably creep in ( neither good for heart or general health). Communication , explaining and reassuring patients..would have a very beneficial effect.However many if not most patients seem to feel “lost” at the least and abandoned at the most!
Thank you. It would only have taken a call from my surgery saying they were aware of my hospital admission and any problems to ring them. I wasn't aware they were involved in any way. I'll let you know what happens when I speak to them. I'm going to insist on a face to face however long that takes
I was diagnosed with heart failure last August 2023 and prescribed diuretics and then left to get on with it. After a couple of weeks I was struggling with breathing and could not lie down to sleep. In the end I called 111 to ask their opinion and I was whisked into hospital for a week of stronge intravenous diuretics and other drugs. That solved the problem , apart from getting Covid while I was in there. I have been ok for the last year on 5 different drugs to reduce blood pressure and fluid retension. I can do most things and get some regular exercise. There are a few side effects from the drugs but am managing OK. Hope some of this helps. My crisis forced the issue but maybe you should chase them up if you are still feeling rough. All best wishes
Sorry to hear this. The refusal of your referral is quite unusual. I am often glad to be in Aus …. There is frequent mention on this site of apparent inadequacies /anomalies in the UK med system compared to ours.
Palpitations are usually associated with atrial flutter, and in my case atrial flutter and atrial fibrillation often co exist. My HR was all over the place 30-150 and I now have PPM to keep it at 60 so no more bradycardia.
But my SOB, fatigue and dizziness still exist. Just 6 days ago my EP assured me the dizziness came from my meds (a similar range to yours) and I am having an AV node ablation in 10 days.
In my experience many of the issues you raise were initially not treated. Cardio’s insisted that if no symptoms, no treatment. But you certainly have symptoms that seem to debilitate you, and reduce your quality of life. You didn’t mention AFib and for some it causes same symptoms as your’s.
My advice for what it’s worth is to continue to pursue the quest for treatment. Catheter ablation might be an option …… it does work very well for some people.
Thank you. That does help. I think actual hospital treatment here is very good but after care is not joined up in any way. And living in a rural area with no means of transport doesn't help. I've booked a phone call with my GP and will ask a lot of questions. I believe in taking responsibility for my own health where I can but, as you will know, it's hard to raise the energy to do that some days. I have AFib just as you said and I will certainly look up ablation. I've found the Pumping Marvellous website recommended by BHF a really good source of information. I've improved over the last couple of days but still have palpitations, poor breathing and can't walk more than a few yards so I'm hoping you're right and it's the meds and my GP will take over. Good luck with your AV node ablation (I'll look it up!) and thank you for taking the time to reply
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