hi ….I have posted on here a few times ..back in Feb this year I saw privately Cardio specialising in AF …as I wasn’t enjoying a reasonable quality of life …starting to get out of breath…he said with no question Pace and Ablate ..Ihave had AF for approx 15 years. With usual drugs Bisoprolol …Edoxoban…. Had the PM fitted at the end of March..fine…then the Ablation late May..then the breathlessness started so much so they kept me in hospital another 4 days….whilst in hospital I picked up Pneumonia ..which was diagnosed by my GP. Had antibiotics prescribed …still breathless fatigued unable to do anything …saw GP four times more antibiotics …one day felt so poorly we called an ambulance …A and E pumped me through with fluids and more antibiotics. Emailed Cardio twice … no reply …back to GP after five weeks who asked had I had a EKG …I didn’t think I had …GP wrote to Cardio …eventually I got a tel con with Cardio…in between this after two urgent phone calls to his Secretary I got a phone call early one morning from Cardio saying you had better come in to hospital and be seen…this had taken six weeks…the upshot was I was seen my a member of his team…who said we had better keep you in.. for tests. Eventually had an EKG …which showed I had Pacemaker Syndrome…the top half of the heart was in sinus Rythm but bottom half not…unusual apparently…I thought great we have an answer as to breathless which was now pretty constant and awful fatigue. After a few days because I only had a one lead attached to the PM…they decided to put a a new two lead PM…the cardio said sometimes it works for some but not for all…a chance I was willing to take. I was in hospital a week whilst all this was happening…on my discharge letter it said HF (heart failure) this had never been mentioned before….anyway home approx 10 hours felt awful couldn’t breath…called an ambulance who refused to come …said get to a treatment centre…so called a taxi …eventually got to A and E who were fantastic …they worked on me another EKG …fluid round heart…possible blood clot somewhere…I ended up in the Acute Medical Ward…it was like a cattle market compared to the Dedicated wards of Cardiology. I am not complaining about staff I was treated with great kindness and care. I still didn’t know was it Heart Failure ? Numerous blood tests …all vital signs good but still breathless…and fatigued if I did anything…it wasn’t so bad in hospital because I was laying down most of the time ….never saw my cardio again…after two days I was allowed home Dr who I saw before my release said you won’t want to hear this but the breathlessness may not go… still not really telling me the truth regarding HF. My first day home was awful coming to terms with having HF I felt really unwell still having problems breathing. What do I do next seems like I have permanent breathlessness …not sure now whether to go back to local surgery and get their advice or whether to book privately a visit to a Heart Failure Specialist …in between all of this legs, and stomach swelled…I was carrying so much fluid. GP put me on Furosimide., which has helped. Being an ignoramus about Heart Failure I have been trying to research as much as possible which is rather scary when you read up on line.
I would welcome any nuggets of wisdom from anyone…everyone is always so kind on this website I am elderly ..86 infact So realise sensibly that when you get to this age something has to give! Any advice would be so greatfully received.
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Lamplight37
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The term heart failure simply means that your heart is not pumping oxygenated blood effectively around your body the cause of which can vary. Because your organs are not receiving enough oxygenated blood, they are not working well - hence all the symptoms and especially the breathlessness and the fluid retention.
Heart Failure has many different causes so your prognosis will depend on the cause of the heart failure which may not be the AF but a scan or an echocardiogram will be able to give some detail.
Blood around the heart though sounds a different story altogether and thank goodness you took yourself to A&E! No wonder you were feeling so bad. It always distresses me when you hear of diagnosis on the discharge papers which have not been properly explained to people. I suppose in these times staff are just so stretched things get overlooked, no excuse but could be a reason as explanations take time. I think the importance of taking time to talk and explain to people is greatly undervaluedl.
My understanding was that the choice of Pacemaker when considering Pace&Ablate was really important. I was told by my EP when my choices reduced to Amiodarone or Pace & Ablate that your chances of going into HF within a year with a 2 chamber Pacemaker were quite high because when only one ventricle is paced there is a tendency for the ventricles to start to go out of sync. When that happens it’s only a matter of time before you suffer heart failure.
I was told that the recommendation in that case would be to change the PM for what is called RST = resynchronisation therapy pacemaker - which paces both ventricles, keeping them in sync so this maybe what your cardiologist is talking about when say there needs to be a 3rd lead placed?
My EP had to fight very hard to get me the RST pacemaker in the first place, for which I will be eternally grateful. Why doesn’t everyone get one first time with P&A? Two reasons cost and lack of resources. The cost of RST pacemaker is x3 a 2 chamber PM. Resources - only the very skilled and experienced cardiologists are able to place that 3rd lead and there are few of them around skilled enough to place the Left Ventricle lead and even then there is a high failure rate which can cause more problems. Mine detached so a I had to have a second procedure which wasn’t pleasant.
I’m afraid age may also be a major factor. I am so sorry for your predicament and do hope that your medical team will come up with a solution keep pushing and please know that heart failure can improve. It maybe worth seeing someone privately - they at least may give you the time to talk to you! Be aware though you will be charged for all the required tests - ECG, Bloods, Echocardiogram etc and those cost mount up. An appointment will be circa £200-300 but the tests will add up to considerably more.
My husband went into heart failure some 5 years ago and he responded to medication so his Ejection Fraction (a % figure which is used to judge how well your heart is pumping blood) went from 35% up to 55% within a few months.
Lifestyle changes can help - the way we breath is incredibly important so if you breath through your nose and gasp for breath you will not be getting good gas exchange which happens in the bottom half of the lungs. Eating a nutritious diet and gently exercise, doesn’t have to be anything strenuous but keep moving as much as you are able. Getting enough rest is also crucial as is managing your worry thoughts and stress.
I’m sorry that I can’t post a nugget of wisdom for you, but I just wanted to say that I really feel for you and that you simply shouldn’t have had to suffer this much at the hands of the NHS. HF isn’t something that you should have to run to the private sector to solve.
I’m really hoping that we see another post from you soon saying that they have got their act together and resolved your problems and your quality of life improves dramatically. Stay strong.
Snap! Had pm fitted September, AV node done November. Started getting breathless, bloated! My two leads were reduced to one as now in AF 100% of time
Saw EP on Wednesday last for follow up, only five months late,and asked could it be HF? Advised didn’t think so, heart looked good on everything but would sort another ultrasound. Other than that he had no idea!! Oh and take a fourth diuretic! 😱😢🙄
Hi Lamplight, that sounds so scary! If it’s any help my understanding is that heart failure is not so awful these days as the name suggests, but shocking if you’re not having things properly explained. If you can find courage and time I’d give PALs a call and explain what’s happening so they can chase things up. We did this for my father in law when no one told him why they were keeping him in hospital. I did the same in relation my audiology clinic. It’s horrible having the unknown hanging over us, though it seems there are so often long waits in cardiology. Let us know how it goes, and good luck 😊
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