Two weeks ago I went for a stress echo test. It was a real shock that after a preliminary echo the test was abandoned. Serious faces and mutterings all round ensued, and a cardiologist came in, studied the screen and told me I had heart failure! She advised me not to go on my planned holiday till I'd seen the consultant in the "rapid access" clinic. Did I have swollen ankles? No. Was I breathless? Not really perhaps occasionally now I came to think about it.
I looked at the screen and saw that the left ventricle was contracting less strongly than the right. I have a pacemaker and the RV has the pacing lead.
She said the treatments are good. I'm already on Apixaban. My BP meds are good. My BP is controlled. My AF is controlled after 2 ablations with Flecainide and Bisoprolol. Bradycardia controlled with PM.
Later the pacemaker clinic said I may just need another lead.
When the echo team left another very junior doctor sorted out the leads and said, bless him, that he didn't know why they call it heart failure. It's a decline in function. In Germany it's heart insufficiency - marginally better I guess. So I'm confused.
Now with holiday duly cancelled I'll be in the clinic (after a 4 week wait) in October booked on a strike day🙈. Just wondering what next. The 4 week wait seems like 4 years. I'm sleeping badly. Feeling like I have had a death sentence .
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Coco51
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Hi Coco, first thing to say is that heart failure is not like concrete failure - big crash, disaster. It means what the wise junior doc said, heart not working as well as it should. You are lucky they have got onto it and taken action promptly. Sad about the holiday but if waiting for tests, procedures etc your insurance would be invalidated anyway. I think the use of biventricular pacemakers is to prevent this situation. Heart failure is treatable and reversible so although I know it’s useless unusable advice - don’t worry! ❤️🩹
I was diagnosed with heart failure along with AF 9 years ago and I am still here lol. At the time I was allocated a heart failure nurse (also a AF nurse practioner) who I saw regularly. The first thing she did was assure me that I was not about die. It is just that your heart is not working properly but it can be managed. I did have bad fluid retention and breathing difficulties, I was given Ramipril to help my heart pump more efficiently and AF meds beta blocker, channel blocker and anticoagulant. There have been ups and downs along the way but generally (I am now in permanent AF, never had an ablation and my only option left if pace and ablate or meds) things are under control.
One of the main symptoms of HF is fluid retention, legs, stomach and lungs, which causes breathing problems, you say you do not have these symtoms so that is good. I have never had a stress test but I think others on this forum have said that they had problems when having one and it had to be abandoned part way through. Your meds and pace maker seem to be doing their job. Some doctors seem to causually throw out the words heart failure when all they are saying that there are some problems with your heart. Three weeks ago I was blue lighted into A & E HR all over the place, severe breathing problems. It turned out to be a virus so meds given and now almost back to normal. I noticed that on my discharge letter my heart failure on medical history has been evelvated to chronic congestive heart failure!!! A week after my discharge I did get a call from one of the specialist heart failure nurses, went through all my symptoms, how I was doing ect. and she deemed all to be under control and no need for her to see me.
Sorry to hear you had to cancel you holiday, but please be assured you will be okay, stay calm and hopefully you will get this sorted soon.
That is a really thoughtful and helpful response. Thank you. Ever since I had the diagnosis I have become a bit breathless, never feeling I can fill my lungs and so taking another breath. But have come to the conclusion it is over breathing/ hyperventilation because of anxiety. I'll keep an eye open and go to A&E if it gets bad. Do you you regulate your fluid intake? I am on a diuretic already for Blood pressure. Indapamide 2.5 a day.
Chronic congestive is very alarmist and I'm glad it turned out to be ok.
For the first couple of years I was on Furosemide 40mg a day but I gradually came off these as I felt I was not retaining fluid this was approved with the HF nurse. Since then I keep a watch on my wieght weekly and ankles, first sign I get of fluid retention and will take Furosemide for a few days. My AF very much reacts to lack of fluid intake so it is difficult to keep a balance with taking Furosemide and keeping up with a good intake of fluid for my AF. On one visit to A & E a few years ago, they decided to give me a large dose of Furosemide because I might have some fluid on my lungs, I asked them not to because I knew I had no excess water but they persisted and I felt so dreadful I let them give it to me. Outcome was I became totally deydrated within a couple of hours (and that is really painful, muscles become really painful) and had to be put on drip for 24 hours to replace fluids. So I am not a great fan of Furosemide also of course you have to arrange your day around when you take it because of suddenly needing the loo for 3 or 4 hours!!!
I do have mild asthma as well so do get breathing problems but sometimes it is the AF that causes breathing diffculties it hard to know which at times. But I think a lot of people with AF have some breathing problems and sometimes it is the medications i .e beta blockers, I am on Nebivolol (used to be on Bisoprolol which was not good) this change has helped a great deal. As I said in first reply there have been lots of ups and downs along the way. Take care.
Thank you for the detail of your case. It is very helpful to know this. Sometimes I feel the diuretic tablet indapamide is too much in hot weather and I halve it. The problem being I feel a bit lightheaded when I stand up and think it is because I am dehydrated. One thing I'd like to ask. Do you Sometimes get very fatigued in the 2 hours after taking the tablets in the morning which gets better around midday? I have been putting this down to the Bisoprolol, but now wonder if this is a common problem with HF.
The tops of my feet get swollen (a bit of a mystery) because if I have an anti-biotic for some other reason, they do not swell! Anyhow my GP prescribed indapamide, but when I went for my annual appointment with my Cardiologist, he said 'That's the wrong one' and put me on a potassium sparing diuretic Spironolactone (the tops of my feet still swell), so I'm not sure who to consult about them as the GP and Cardio aren't overconcerned about them, the Cardio I saw a few weeks ago felt arms, legs ankles , abdomen for swelling, none !
No, the only swelling I get is the tops of my feet and I'm the only one particularly bothered about it, because it limits the shoes I can wear. No swelling of legs or ankles
Hello Nomis. Bad luck, but they say the treatments are good. When I eventually got to the so called" rapid access clinic" after a four week wait, I saw a great consultant who explained I had pacemaker dissynchrony, which is reversible - he claims. I was given Forxiga (Dapaglaflozin - a diabetes drug also good for heart function) and Spironolactone ( potassium sparing diuretic instead of Indapamide). He said I should have my pacemaker changed for a bi-ventricular pacemaker.
Fortunately I had emailed my EP who'd ordered the routine echo test which diagnosed the HF. He was responsible for the earlier PM and my AF treatment. He was surprised because he hadn't been told of the result of the test and put me on the list for a new PM. Also said to stop taking Flecainide - can make HF worse. I had the new PM fitted in October. If I hadn't emailed I might still be waiting.
Before the PM change I was feeling less breathless on the new drugs, but the PM change didn't have the miracle effect I expected, still a bit breathless although much better on stairs and hills. I wonder if the breathlessness is a bit to do with anxiety.
As I wasn't due to see the HF consultant till March I went to see him privately and was glad I did. He hadn't been told I'd had the pacemaker changed yet! But he said it could be 3 to 18 months before the real benefits would be apparent. Hearts remodel under stress and muscles can thicken, it takes time to rectify. Now he knew the PM was fitted he went back to the hospital and put me on the list for a HF nurse led clinic where I'll be prescribed Entresto instead of Lisinopril for BP under their guidance, and have a proper follow up. That's in 2 week's time.
The pacemaker fitting was very tricky. I wont go into detail, but a junior member of the team changed the pacemaker and tried for 3+ hours to change the leads and put in a third lead. But some of the leads wouldn't go in. He kept taking them back out and was getting a bit agitated. I could hear all this going on. I got really upset as I'd been told it would be all done in 90 minutes. Anyway the top consultant was called, gave me morphine, pronounced the leads were all faulty and put in good ones himself in 30 minutes flat. I wish he'd done the whole thing. I also wonder why they didn't put in a biventricular pacemaker to start with, because I was told dissynchrony was an issue with my particular brand of bradycardia. I know that's water under the bridge but I will be asking.
Needless to say I've had some AF as I'm off Flecainide, but only two bad bouts. Less than I expected. I might be offered a third ablation. Not sure about that yet.
Many thanks for getting back to me, I can relate to a lot of similarities
HF clinic said I'm in mild/moderate HF and I've been given Ramipril with more meds looming.
The cause of my HF was thought to be thyroid related, thyroidtoxicosis which may have been caused by amiodarone but recent blood tests showed my thyroid levels near normal.
I have no fluid build up but suffer fatigue, breathless, weak legs, no energy, low concentration, and really struggle on exertion. EF <40% and BNP 1200.
Echo showed left ventricle systolic disfunction with dilated atrium. Paced 100% on R/H side which has been stated may be causing dissynchrony and still in afib.
Never been the same since my pacemaker n ablate.
Wish I'd never had it done! Just a struggle everyday now.
I don't know where il be in a few years time, I agreed to the the pace n ablate due to having Wolff Parkinson white syndrome, the extra pathway that needed ablated was close to my AV node and both got ablated in the same procedure hence the pacemaker.
I agreed to the procedure as I was told I was 5 x more at risk of a stroke or blood clot, no brainer at the time but was never told I would end up feeling the way I do 20 months later and in HF and afib.
That sounds very distressing. Having the pace and ablate almost by accident is not good. Have they booked you for the biventricular pacemaker? Sounds like it could help. Med wise, I also take Bisoprolol which the HF consultant said is standard HF treatment along with an ACE inhibitor like Lisinopril or Ramipril. But as i said the Lisinopril is to be replaced with Entresto. And I also take Apixaban. Are you on all those? Of the new drugs I've been prescribed, the Dapagliflozin made a difference to my energy level almost straight away.
No just on Ramipril which only got prescribed yesterday at the HF clinic, said I would need other meds but they don't prescribe them all at once so the other meds will probably be introduced on my next visit in two weeks time.
Ah well 2 weeks isn't too long. I hope they were encouraging and reassuring. Your ejection fraction is better than mine was when I was diagnosed. I never was told the BNP number. I will ask next time.
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