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Focusing on disability benefits, and sharing my experiences of COPD, heart failure/aortic valve calcification & stenosis, ME/CFS (27 years), and general disability/mobility issues, in the hope they will help others, along with books, cooking, and anything else that piques my interest…

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Chronicles of the Heart, Part 26 – addendum… »

Chronicles of the Heart, Part 26…

January 9, 2012 by Ron

Right, having spent the afternoon at Arrow Park Hospital’s cardiology dept, the result is that I do, incontrovertibly, have heart failure. But there’s a mystery – it’s not the normal heart failure associated with aortic valve calcification.

Yes, for once I got a good doctor, one prepared to listen – which always makes a change. A nice guy, too, but like all doctors he had a  tendency towards bullshit. Only a little bit, and it’s probably excusable as he doesn’t yet know how much I know (which, as it turned out, is, anyway, a hell of a lot more than he expected – he’s also given me a research tip!). He agreed, too, that given my symptoms, NOT having heart failure just wasn’t a possibility – which I’ve been saying for just a couple of weeks short of a year!

So, the normal type of heart failure associated with aortic valve calcification – in which the left ventricle retains some blood it should have been pumped – is absent, for now at least, but as the valve narrows (it is already slightly narrow), that’ll happen – it’s inevitable. That’s where the BS came in – he at first said the valve wasn’t narrowed (stenotic), but when I pointed out that it could hardly not be, he conceded that yes, it is narrowed a little. But, hey, it’s a rare doctor, at any level, that will concede a point to a patient about anything. My only question is how much is a little?

Then what sort of heart failure is it? Cor Pulmonale would be my guess, as I was diagnosed with the early stages of it about 10 years ago so it’s bound to be worse now, but with COPD that’s just so obvious I don’t know how he could miss it.

He was blue-skying about badly-connected coronary arteries, which  might actually be a possibility given that when I had an angiogram in 1996, they had trouble locating the entrance to one of my coronary arteries which wasn’t where it should have been, apparently. He also floated the possibility of a hole in my heart – which I think can be discounted unless holes spontaneously appear, which I’m pretty sure they don’t. From my teens to my 41st birthday – when it all went belly up – I was extremely active – within the limits of my respiratory problems – more active, in fact, than many perfectly fit people. If I had a hole in my heart, that wouldn’t – couldn’t – have happened.

So assuming he’s being honest about the aortic valve calcification and narrowing being fairly minor – and I have to believe him on that – he’s lined up a double-catheter angiogram which will reveal if he’s having me on, so I trust him.

I had a bunch of blood tests, an extensive spirometry test and an ECG, plus I was given a large plastic bottle in which to collect 24 hours worth of pee. Oh joy!

And when I left he was busy lining up a whole raft of further tests. He says I shouldn’t be as disabled as I am, but he’s in for a disappointment if he thinks he can fix it – most of what ails me predate my heart problems. The heart problem isn’t fixable either – you can’t cure heart failure – so I’m not yet sure where he thinks he’s going with this, but I’ll go along with it unless I feel that some tests are dangerous – that is the risks outweigh any potential benefits.

And so, Doctor Abdelmouti, at St Catherine’s Hospital, Birkenhead, perhaps next time a patient points out that all the symptoms of heart failure actually do point to, er, heart failure, you won’t laugh idiotically and deny it just because it doesn’t fit your narrow world view, as you did also when I asked, given that I had the symptoms of heart failure, what else could it be? You didn’t know and – worse, you didn’t fucking care!

You might like to bear in mind for future reference that if it looks like a duck, walks like a duck, and quacks like a duck then it’s a good idea to accept that it’s a bloody duck!

And to round off a pretty good day, I got a huge smile from a very young, extremely blonde and gorgeous doctor. No idea why, but it sure as hell cheered me up.

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4 bloggers like this post.
  • darcy5211
  • Deborah
  • warriet
  • TTD

Posted in A Chronicle of life with heart failure | Tagged Aortic valve calcification, Candesartan, COPD and heart failure, Health, Heart failure | 14 Comments

14 Responses

  1. on January 9, 2012 at 5:42 pm warriet

    Good news Ron!


    • on January 9, 2012 at 5:48 pm Ron

      Good to be vindicated – only took a year! – but a bit like the curate’s egg.


  2. on January 9, 2012 at 6:05 pm Tricia_TD

    At long last, a Dr who listened to you. I hope that, after all the test are done, and results are in, they can give you something to make your life a it better than it is today. I would hope for a cure, but I know that isn’t possible.

    Was anything said about getting you sleeping on your bed?


    • on January 9, 2012 at 6:14 pm Ron

      Didn’t need to mention it once he confirmed heart failure – it goes with the territory and there’s no solution. Must stock up on port though! Had a glass last night while I was reading – next thing I knew my 06.00 meds alarm was going off. Had the best night’s sleep I’ve had since all this started Just as well as I doubt I’d have been able to get there otherwise.

      Hope he remembers to tell my GP how wonderful he thinks I am (extremely impressed with letter to GP, he said), just to annoy the bugger!


  3. on January 9, 2012 at 6:07 pm Deborah

    Who are these people giving your posts three stars? Boo and hiss. I just clicked ‘five’, which ratcheted it up to four. Keep us posted, Ron. And never underestimate the power of a smile!


    • on January 9, 2012 at 6:16 pm Ron

      Three stars? Miserable sods don’t deserve me! Thanks for that – I shall have to open the post in IE and hit refresh til the damage is undone!


      • on January 9, 2012 at 6:23 pm Tricia_TD

        I thought the 3* people were off their rocker. Can they not see I genius when they meet one?!


        • on January 9, 2012 at 6:25 pm Ron

          Exactly my thought! (Never knowingly undersell myself! ;) )


  4. on January 9, 2012 at 6:44 pm Chrissie

    About bloody time too…


    • on January 9, 2012 at 6:57 pm Ron

      Yep!


  5. on January 11, 2012 at 4:57 pm Brad

    I’ve had a hole in my heart all my life and its never stopped me from doing anything then again i suppose mine must be small compared to the size your consultant is talking about?


    • on January 11, 2012 at 5:48 pm Ron

      I find it hard to believe I’ve reached the age of 67 and no-one’s noticed, given I’ve spent a large proportion of my life in hospitals. Mind you, it wouldn’t surprise me too much either!


  6. on January 11, 2012 at 7:31 pm Brad

    I think if was of any significant size they’d have spotted it . Mine is very slowly shrinking so i’m told so much so the consultant couldn’t find it at my last check up but you could tell i still had one as from the echocardiogram you could see the doppler effect where the blood had leaked out.

    According to the mayo clinic they can develop later in life but i’d be surprised as before i read that i assumed it was purely a birth defect http://www.mayoclinic.com/health/heart-murmurs/DS00727


    • on January 11, 2012 at 11:40 pm Ron

      Hmm . . . Can’t see anything on the Mayo page about holes developing in adults. Indeed, it specifically refers to them as congenital. What happens later in life is valve problems, like mine.



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