Heart Failure Question

[Debfro34]

Hello I am looking for some perspective I think. My husband was not treated for his AF and high heart rate for four weeks until I managed to get him to ignore the GP and go to A& E, He was diagnosed with heart failure (35%) and is now on 8 different drugs. He had a follow up procedure booked (cardioversion) which they cancelled due to lack of beds. I really want to know what it all means for the future. Will he recover at all? Will it get worse or stay the same? The internet says things like only lasting five years so I have come to the experts. He has gone back to work today still in atrial flutter, with a pacemaker and all these drugs because he is worried he will lose his job but he does 12 hour days. nobody has time to sit and talk to us so he is doing what he always does and ignoring it. I like to plan things though. Any opinions/help would be useful. He has Hypertrophic cardiomyopathy diagnosed 9 years ago, Thank you for reading

[Ppiman]

Hi there. I had atrial flutter with a persistent high rate in 2019 and then only drug that got the rate down was digoxin, which allowed me to reduce the dose of bisoprolol and made me feel altogether better. Does your husband have this (AFl) or atrial fibrillation (AF) - your post isn’t clear.

I was told that AFl is the hardest to treat with drugs but the most successful and easiest to treat by ablation, which I had in June that year. That worked but I still have some issues with racing heart and occasional fibrillation. It seems not uncommon to have more than one thing!

Heart failure is a poor term since all it means is that the heart isn’t pumping at normal capacity, as measured by an echocardiogram or cardiac stress MRI. It can be caused by the persistent racing heart of AF and AFl, rather than by the arrhythmia itself. Of course, other heart problems can cause it, too. Mine recovered after my ablation.

From my reading, life expectancy for people with HCM is pretty much normal, especially when it occurs in later adulthood. I’ll link to this at the end of my post. Again, it seems to matter what else is going on in the heart, so it seems to me a chat with a cardiologist is the best source of information if scans have been done since each heart has different issues.

I think the heart rate needs controlling, as doing anything with tachycardia is hard work indeed. Also the heart failure will as to the difficulty. I doubt working will actually cause any harm if he’s able to do his job, although 12 hour shifts are hard work for anyone. Again, your doctor is your guide here.

A cardioversion is a shock to the heart which stops the heart briefly to allow its natural pacemaker to reset the rhythm. This sometimes works well, and sometimes has only temporary success. I wasn’t aware you could have one if you have a pacemaker inserted but I’ve just read that with modern pacemaker it can be done.

Steve

[Debfro34 in reply to Ppiman]

Hi getting to speak to a cardiologist would be wonderful but they have cancelled his appointment in May as well as his procedure last week. Voicemail box is full when trying the secretary's as well. He is now on digoxin as well as Bisoprolol which they increased as well as a lot of others. He is in persistent flutter and then has bouts of arrhythmia as well. He has had ablations before which worked for a while but they offered the cardioversion then cancelled it and have not re booked it. Heart rate is under control. Our son died at 29 from HCM which is when we discovered the gene. Its just difficult to know what might happen going forward and we have no chance of seeing a consultant to ask. He has no idea how much he can push himself to get better or even if he can get better.

[Ppiman in reply to Debfro34]

Goodness, you've had some struggles in your life. I can sympathise and relate to some of that. Life can be simply terrible at times, and hard work at others. I hadn't realised the history behind your husband's condition and wonder whether you've thought of paying private consultation, at about £200.00? That would be my next step, I think, if only to talk things through with more time available than the NHS is able or willing to allow.

Steve.

[Debfro34 in reply to Ppiman]

Thank you

[Bagrat]

It may also be worth having a chat on phone with British Heart Foundation Nurses. However just went to check see pic. But you can still do online chat. Sounds like short glitch.

BHF screen shot

[Debfro34 in reply to Bagrat]

Thank you

[rosyG]

Agree with wise opinions so far. I think you should push for thesecancelled appointments. Get pals at the hospital to help if your Gp can’t do it you need Oreo formation which only a cardiologist can give really

[Debfro34 in reply to rosyG]

Thank you

[WhitstableWanderer]

Hi Debfro, just to add some perspective.. I was told I'd suffered 'heart failure' at A & E about 4 years ago - quite a shock to someone who had always been reasonably fit and sporty. Apparently it was brought on by an irregular heart rate - A Fib - and my Ejection Fraction was down to 9%, should be about 60%... I assume that your husband's 35% measurement is his Ejection Fraction (EF) too? This is a measurement of the hearts efficiency and is usually assessed from an ECG. The cardiologists were planning to fit me with a pacemaker as I was well below the accepted 35% level that PMs are usually considered. However, my EF improved over a 16 day stay in hospital, creeping up to 22% by the time I was discharged. As I was feeling stronger by the day, we agreed to monitor and retest via ECG a few months later. Via exercise, diet and no caffeine and alcohol, I managed to get the EF up to 32% and we all agreed to just monitor. I was on beta blockers, rate and rhythm control meds plus statins for a long time, along with the essential anticoagulants. Three years on, I have weaned myself off all but the anticoagulants, have an EF of 44% and feel absolutely fine. I play golf two or three times weekly, only getting a little breathless on hot days (when I maybe haven't rehydrated properly) and when climbing up steep hills. Life is pretty good and I have posted this in order to give you and others confidence that heart failure isn't a death sentence and A Fib isn't always debilitating. But we are all different, of course..

[momist]

Doctor Google can be VERY scary, and should be ignored. Good advice on here, as you said.

[Debfro34 in reply to momist]

Thank you. I am trying to find a real person to talk to and this site has been so helpful . I will avoid Google if I can

[Zeinmassri]

Hi I can totally relate to your husband. I’m 34 years old recently diagnosed with HCM apical I was told non obstructive. I also currently in permanent flutter with traces of Afib but mainly flutter is the issue. Now I haven’t been diagnosed with heart failure.

Im really sorry about your son passing away but I’m assuming your husband diagnosis was based on your son passing ( may he Rest In Peace ). I totally understand how hard it is adjusting to all this. If you want I can answer any questions you have about both conditions

Feel free to message me

[scm21]

I’m literally in the process of being diagnosed but had a letter over the weekend basically outlining heart failure. It had a whole load of medical jargon so there I went to doctor google and it killed me so I’ve obviously spent the last few days sobbing and booked an appointment to see my private cardiologist! Who’s assistant reassured me that I need to see a medical professional before getting hysterical. HONESTLY my only advice is STAY OFF GOOGLE !!!

[Bronte23]

Hi Debfro34, I’m so sorry about your situation. Getting help and advice for your husband is hugely important, as you realise. I have always been devoted to the NHS and it was with huge reluctance that I sought for help by booking a private consultation. It turns out it was the best thing I could have done. I saw Dr Boon Lim in London. Type his name into Google and you will easily find out how to contact him. He is a kind and highly knowledgeable consultant. It will cost around £250 for an initial consultation. He wrote a detailed letter with a suggested treatment plan which I then showed to my doctor. I did then pay to see an electrophysiologist ( EP) too. Following this, I have had excellent treatment from the NHS. I guess paying for consultants’ help meant I jumped the queue, something that greatly troubles my conscience but I became so unwell and so desperate that I felt there was little choice than to pay for advice and help.

Whatever you decide to do, be persistent and try to keep your spirit up. Help and support is certainly out there and with persistence you can access it.

This forum has been hugely helpful to me.