Shock diagnosis and 4 week wait for "Rapid Access" Heart Failure Clinic. Is my Anxiety justified?

[Coco51]

Two weeks ago I went for a stress echo test. It was a real shock. 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 yes, 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 Lisinopril, Indapamide. My BP is controlled. My AF is controlled after 2 ablations with Flecainide and Bisoprolol. Bradycardia controlled with PM. Statins too.

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. Although goodness only knows as it's booked on a strike day🙈. Just wondering what next. What are these treatments? The 4 week wait seems like 4 years. I'm sleeping badly. Feeling like I have had a death sentence .

[BeKind28-]

Hello

The term heart failure is enough to make us all feel so worried and I think the term Germany use is so much better and wish the UK would adopt that term

I can understand why you are so worried and 4 weeks does seem like forever but it will go quick and then you can find out what needs to be done

I am sure if it was so bad they would have kept you in but they obviously think you are safe to be at home while you wait for your appointment even though I know you are having all these negative thoughts but the things they can do now the term heart failure is not a death sentence anymore and try and stay focused on that

I hope others will be able to help you more when they read your post and let us know how you get on x

[Coco51 in reply to BeKind28-]

Thank you for those reassuring words. It's good of you to reply. ❤

[BeKind28- in reply to Coco51]

x

[EU95PTM]

I just have one recommendation, and that is to take a look at the Pumping Marvellous website. It is a patient led charity for those with heart failure. Until I found them I was convinced my life was effectively over, but they have produced amazing, easy to understand literature that was enormously helpful for me. They also have a Facebook support group which I’ve found really useful. I live with heart failure but I am lucky that I am largely asymptomatic and the drug combination I am on is keeping me stable and I now am much more optimistic about the future. Wishing you all the best.

[Hidden in reply to EU95PTM]

They also have excellent podcasts to listen to as do the podcasts called The Ticker TapesBoth highly recommended

[Coco51]

Fantastic! Thank you. I will take a good look.

[Hidden in reply to Coco51]

They also have excellent podcasts to listen to as do the podcasts called The Ticker Tapes Both highly recommended

[Coco51 in reply to Hidden]

More good advice. It's really helpful to know about this. Thank you

[Noodlesalad]

Sorry I can't answer your questions. I do understand your anxiety and hope despite the impending strike action you do get seen.

[Coco51 in reply to Noodlesalad]

That is kind. I appreciate the fellow feeling.

[Wire57]

Sorry to hear about your recent diagnosis, but there is light at the end of the tunnel.

Four years ago I was a very healthy 62 year old, or so I thought. On 20/10/19 I had a cardiac arrest, when I came out of the coma the news I received was you have severe heart failure with a 10% EF and dilated cardiomyopathy. (Left side of heart damaged). I was put on a cocktail of medication and fitted with a CRT-D. Within ten weeks I was back to walking three to four miles a day, by six months I had joined a gym, walking eight miles a day. Now as well as the above I cycle, swim and play for hours with my grandchildren outdoors.

Take care and remember tomorrow is going to be a good day

[Coco51 in reply to Wire57]

That is wonderful! Thank you for sharing your inspiring story. I hope I can follow your example. After my current limbo and a proper diagnosis and a plan let's hope so. I am realising there is treatment. Not sure about a a gym though!

[Bigbrian]

Hello

Hearf failure is a misnomer, it’s only reduced output.. They will have given you a Ejection Fraction percentage, and the heart doesn’t pump out 100% when it’s working perfectly anyway. Look at it this way, you have got cardiologists helping you out, junior doctors on the case and a pacemaker team, can’t ask for much more support than that.

[Coco51 in reply to Bigbrian]

That's a good way to view it. Thank you. I'm beginning to realise that if I were in immediate danger they would have admitted me. People's replies like yous are a great help in restoring my sense of perspective.

[BC-10]

You'll be fine. Modern medicine and especially the cardiology side of things has dramatically improved over the last 20 years or so. I remember being told I had atrial fibrillation and my life was effectively over ! What a lol. That was 30 years ago and I'm all but cured these days.

The looks of concern and the whisperings that you experienced are the anchor point behind your anxiety. I do wish doctors wouldn't do this, they still have a way to go with their bedside manners and should never discuss a patient in hushed tones in front of them. Try to get over that bit and look forward to receiving the latest in cardiology health care.

To them, you are now a very valuable problem that needs solving. Much like when a problematic vehicle comes into a garage; the mechanics love it and will do whatever they can to solve it. This is a very unempathetic way of putting things but I guarantee this is how most of the specialists look at patients. Which is a good thing really, even though they may seem disinterested, the urge to succeed with you is paramount in their minds.

Cheer up and the very best of health and good wishes to you.

[Coco51 in reply to BC-10]

That made me laugh! Yes I do feel like I have a problem engine, rather like car being in too high a gear and labouring on hills. Time for an MOT with advanced diagnostics and solutions - and not the scrapyard. Just hope to goodness the cardiology clinic isn't on strike on October 4th 🤞🤞

Thank you