Need support, NHS letting my husband go into heart failure.

[Imdunfer]

Just writing for support, feeling very down tonight.

DH has been on the waiting list for an ablation for 13 weeks, after paying £20+k for a pacemaker 3 months ago because he was in heart failure. PLEASE don't misunderstand me, we are well aware that we are lucky to have been able to afford it but it was money saved to safeguard our future care needs, not to do basic NHS stuff that mean he could die by the time he reaches the top of the waiting list.

Today he asked his GP to try to get him up the list because he has new signs of heart failure from flutter that is causing the top half of his heart to beat at over 300 beats a minute. It's overworked, basically. He already has a mechanical aortic valve, he's very high risk with that. The GP told him he can't see hospital records and sent him away to try and find out how long the wait will be for himself.

That process was another whole story, but finally he has found out that he is scheduled for an ablation in September next year, a whole year after going on the waiting list.

If we wait that long his heart could be permanently damaged and ruin the quality of the rest of his life (our lives, I am so not fit to be a carer). There is a good chance he could have a heart attack and die.

So it looks like we're going to have to dig another £30k out of our future security and pay for the ablation, which is quite likely not to work first time and need to be repeated, which we will also have to pay for.

We've paid all our lives into the health service and it's abandoned us in our old age.

Can anyone suggest what else we can do? Or just offer a caring word or two?

Can I thank everybody again for the support and the time your taking to try to help.

We are waiting on a response from the consultant which on previous record is likely to be very soon, GP is checking him out next week to get the deterioration on record, then we'll work on getting booked in early next year privately and hope against hope it works first time.

I have a pacemaker for atrial fibrillation and am now on the waiting list for an AV node ablation which will mean I will be totally dependent on my pacemaker to control my heart. It effectively wipes out the messages between the fibrillating atria and the ventricle sso that the symptoms should be reduced and I will hopefully be less out of breath or wide awake in the middle of the night (as now!) because of chaotic heart.
I presume this is the procedure your OH is awaiting as he too already has a pacemaker.
I have been quoted a wait time of 3 months. This is on the NHS ...I cannot afford this privately.

My understanding is that AF does not directly cause heart failure, but the ventricles do struggle with the chaotic situation. I was told that some of the exhaustion is not absence of oxygenated blood but a lack of volume of circulating blood because the heart cannot pump efficiently when in AF.
The symptoms are miserable and make normal life very difficult. This is not regarded as an emergency but I feel lucky thst I have been quoted 3 months, which is not ideal ... I would like it done tomorrow... but could be worse.
My procedure will be at the nearest centre of excellence which is Birmingham.
I also have a right coronary artery stent ... when I needed an angiogram I went to Aand E with chest pain and was admitted... this undoubtedly speeded up the process.

You could always pay for a one off private cardiac consultant appointment just to run through everything to ease anxiety while you wait on the NHS. I didn’t this and felt very reassured just to have the back up support and advice of an expert even though I couldn’t afford any surgery privately.

Can you tell me whereabouts you are? We would wait 3 months. Good luck with your procedure, I hope it works first time around for you.

It's a good suggestion. I'm sorry you had a similar problem. We already pay private consultants, they're surprisingly cheap for a consultation, I think a lot of people would be surprised.

We know he isn't going to die waiting, as someone else has pointed out the stroke risks are low because he has blood thinners for the valve replacement. But it is straining his heart and if it doesn't get done then he's going to be more disabled by a weak heart at 80 or 90 , if he lives that long, than he would need to be.

He's also autistic and triggered into a panic by medical situations, fear of death and not being in control which can make life pretty fraught from time to time. I also have control issues so I'm in a double bind here. He can't control his situation and I can't control his situation or him not controlling his situation!

Cue panicky threads on MN 🤪 Thanks for your help everyone.

In answer to your question OP, I am near Birmingham - that is my nearest heart centre.

Update, thanking everyone for your support.

GP agrees he's getting worse, has spoken to consultant. Both agree it needs doing. Both apologise that compared with others on the list September will be the earliest and in view of ongoing strikes and emergencies which will increase because of delays to people who aren't emergency right now, is likely to go back from that.

On the good front we have an estimate from the hospital of less than £20k, so it's going ahead in January or early Feb.

We are very lucky that we earned enough to save and were brought up to be savers. Please cross your fingers for us that it works first time!

That's a positive update, OP, and thank goodness that you've got the funds to go private. (I've got a horrid feeling DH is going to get pushed further and further down the list with these ongoing strikes). Hopefully this is the light at the end of the tunnel for you both.

Update. GP wrote a lengthy set of notes to the consultant, who is both his private and NHS consultant on this and he's made space on his private list on the evening of Tuesday 6th January. We're so happy, never expected to get it done this soon. Cross your fingers for me that it works first time!

Good luck 🤞

Wow that's amazing news, you must be terrified and relieved in equal measures. I hope it all goes well for you both.

He's in theatre right now. They're going to burn a strip right across his heart with high frequency radio, threaded up the artery from his groin. Everything crossed that it works for us please everyone!

Sending you both all the very best, hope he is out of theatre soon and that it was successful

Sending you both good wishes and hoping for a successful outcome.

I am in a similar situation. I too have a pacemaker and AF. I am shortly to have an AV node ablation which I will leave the AF as is, but stop those faulty messages getting through to the ventricles and should alleviate most of the symptoms. It is irreversible and will leave me totally dependent on the pacemaker.

Well I hope yours goes a well as ours has. His ECG this morning is perfect and his blood pressure has come right down.

Good luck!

That is good news! A New Year present!
Hopefully I will get mine soon. Fingers crossed!

agreed , if they did private only NHS would miss their skills and the private money makes up for a paltry NHS salaries and huge student loans

NHS consultants (like the one who did my husband's op at 6pm yesterday after he finished a day for the NHS in the gossips round the corner), do not get paid paltry salaries. They are paid, for full time, between £110,000 and £145, 000.

We are so very lucky that we earned a lot and saved a lot when we were younger, because every medic is saying the same, that if he had waited for his turn on the NHS waiting list he would likely have been done as an emergency and if he survived he would have lived whatever life he had left with a damaged heart.

Today is, I hope, the end of four years of relentless stress for me, please don't spoil it with a political discussion.

I’m so glad to hear it went well, my DH was completely missed by the NHS a couple of years ago and was fortunate enough to have private healthcare through work, without that it is unlikely that he’d still be here. It’s not right but don't allow anyone to infer that you are in the wrong or should feel guilty.

Why do they think the AF was damaging his heart? Has he had an echo showing a reduced EF since going into AF? I can’t see anything in your posts that would indicate that the AF was causing heart failure. AF doesn’t damage hearts or cause heart failure unless it’s causing the heart to beat very rapidly, in which case the heart muscle cannot receive enough oxygen and as a result begins to die, which you would see on an ECHO or ECG. It sounds like with your husband was having the opposite problem, hence the pacemaker.

Obviously, the consultants treating him will have all the information, but I work in the NHS and privately and unfortunately am now sceptical of what patients who are prepared to go private are often told. I’m saying this because there is a significant chance the ablation won’t permanently stop the AF, in which case you may be encouraged to pay out of your pocket for repeat ablations. In which case I would seek a second opinion on the NHS, preferably by someone who does not do private work.

My friend had an ablation a month ago. She waited 4 months. If the consultant thought it was urgent enough he would push the surgery forwards

You don't live where we live please don't tell me how urgent it was. He was in heart failure, the GP, pre-op nurse and surgeon have all said so.

Well pardon me but I'll take the advice of the GP and experts who have seen him. We are far from novices about heart procedures or marketing, who can be duped into paying when the NHS would have done it. The NHS in this area is absolutely notorious for its wait for heart operations.

Atrial flutter does damage older hearts by overwork. You'll can't overwork old heart at muscle at 350 beats a minute without it being perfectly reasonable to expect damage to the muscle over time. And his heart is already compromised with a mechanical heart valve and a rising aorta root aneurysm.

There is very little chance that the ablation he has had done won't continue to work. Not all ablations are the same.

Please stop trying to piss on my parade. The operation is done and paid for, I'm not sure what you are trying to achieve with your post.