Chronicles of the Heart, part 12 – the echocardiogram…

First, I have to say that, as I mentioned last week, I have zero confidence in the doctor, who, to protect her identity and me from a libel writ, as she is staggeringly useless, I shall call Dr. Dingbat.** When we discussed my medication last week, I mentioned that the oedema in my legs had improved since starting the Candesartan, and that I put this down to the fact that it improved kidney function.

**Her “I’m the doctor, your opinion doesn’t matter” attitude needs to bloody change, too!

She argued that Candesartan had no effect on the kidneys at all, yet the fact that it does, and the mechanism by which this is achieved, is described in the literature. I feel that such a basic lack of knowledge, especially in the presence of a medical student is totally unacceptable, as was the fact that I gave her a complete list of my meds – which was then lost. A list has appeared in my notes, but it’s not my list and is, in fact, wrong.

So, on to this week, and my echocardiogram, during which the technician expressed the opinion that I really should have had it much sooner, and which suggested to me that she had found something I was going to be unhappy about.

Afterwards, I saw Dr. Dingbat again, who mentioned in passing that I had a calcification of a heart valve,** before rambling on about something else entirely. I had to ask her twice before she would tell me which valve, and then she had to refer back to the notes as she’d forgotten – in the space of a few minutes. And that so annoyed me that I completely forgot to ask about severity. She plans to repeat the echo in three years time, and in the event that this gets forgotten, would I be good enough to remind St. Cath’s? Bizarre or what?

**Aortic calcification, a.k.a. aortic stenosis, since the calcification causes narrowing of the valve.

Frankly, based on how I feel, and how I’m continuing to deteriorate, I’m not convinced I’ll still be here at Christmas, never mind in three years time. And I’m not being melodramatic – I really do feel that ill. (See also the final para.)

I’ve been ill practically my whole life, having had asthma and bronchiectasis since age 2, when measles and whooping cough, in very quick succession, trashed my lungs – I don’t know what “not ill” feels like. I do, however, know very well what “much worse” feels like, and I am substantially worse than I was prior to the illness which admitted to Arrowe Park Hospital (APH), in January.

There is, too, the question of the computer-generated diagnoses from APH. Dr. Dingbat rubbished those, but the mechanism by which they are generated is reliable. If my heart is fine, what was the computer seeing? If the computer was right, what’s the story with my echo? Why does nobody else care?

And, of course, there’s the question why was I told I had severe heart failure in APH? That’s not in my records, nor is the fact that I declined beta-blockers. Digoxin was prescribed, I was told, but never reached me – that’s not recorded either. The ECGs that might cast light on this are missing. I had at least 5 ECGs while in APH, probably more, but only 2 made it to my records – the first one and the last one – at least three are missing.

There is, apparently, nothing else wrong with my heart, which poses the question of how I can I have all the symptoms of heart failure without actually having heart failure? Dr. Dingbat cheerfully pointed out that this was nothing to do with her, and she had no ideas on the subject. I need, she says, a referral to the chest clinic. I sincerely doubt that.

None of this changes my view that a GP with an interest in cardiology is no substitute for a consultant cardiologist.

To further screw things up, the x-ray department’s computer were down, which meant that my x-ray weren’t available to the doctor.

While I don’t question the results of the echo, this, of course, still leaves me with the question of why the slightest activity, like typing this, renders me breathless. I still can’t lie down so that I can sleep in my bed. And while improved, the oedema is still so bad that most days I simply can’t get anything on my feet except socks, and then only with difficulty.

In addition, my heart is still tachy, and erratic – both showing quite clearly on my pulse ox and BP monitor.

Last Sunday, walking  round Sainsbury’s, I felt so profoundly weak, dizzy, and breathless  (an entirely different breathlessness than that associated with my COPD), that I had to cut it short as I felt as if I was about to pass out. It’s the same at home, with any exertion – I have to use my powerchair to move around the building, for example. My PF and FEV1 readings are within acceptable limits, but my breathing is far worse than they indicate, which suggests a heart problem. Actually, it’s not so much that my breathing is worse, as that it’s ineffective. The air goes in and out, and seems to contribute little to my well-being.

All of this saw me online at 03.00 today, researching aortic calcification and trying to find reliable information. Oddly, the Mayo Clinic is relatively dismissive, but MedicineNet.com has an extensive article on the subject, including the information that for anyone with aortic stenosis who is displaying symptoms (i.e., me), the 2-year survival rate is less than 50%. And that is supposed to be nothing to worry about? Fuck!

 

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6 thoughts on “Chronicles of the Heart, part 12 – the echocardiogram…

  1. I think what you need to do is to take or send that MedicineNet article back to your GP and demand a second opinion. And tell them you want it yesterday!

    • I’ll be happy if I can find out exactly what the echo results were – not filtered through this idiot woman!

      I’ve written a long letter to my GP – an expanded version of this post, with added criticism of GPs with delusions of grandeur – and I’m going to enclose a copy of the MedicineNet article too. Means I’ll have to deliver it as it’ll be too long to fax.

      I’m still ploughing through my hospital records, too, as once they move out of A&E they cease to have all but the most minimal contact with reality (and not having heart failure, if, indeed, that is the case, and it sure as hell doesn’t feel like it, has knocked a couple of wheels of my litigation wagon). On the last morning it says I was aggressive because, having taken my own, I wasn’t given any analgesia. The reverse of the truth – I was angry at having to take my own because I wasn’t given any! And angry is NOT the same as aggressive. I was also on the edge of a breakdown after my fifth consecutive night without sleep (and days too).

      One good thing, though – this Chronicles of the Heart “brand” has been amazingly successful.

  2. Hi Ron,

    So sorry you’ve been experiencing so many problems with your dr’s. It’s interesting to me that no matter what other problems those of us with ME diagnoses have as well as the ME, dr’s are still so consistently dismissive of us. It drives me crazy! It’s bad enough to get crappy treatment for our ME but when that pattern also carries over to other, potentially life threatening situations, it’s simply not ok. (Not that it’s not ok with ME either, but really … do they believe that no-one with a psychiatric diagnosis (for that’s how they generally see ME, however false we know that belief to be!) gets life threatening physical conditions too???)

    I agree with Pamela. It’s harder in the NHS to get a second opinion than it would be somewhere like the states … but it’s still possible, and I would definitely recommend at this point that you do so.

    • Hi Susannah,

      Everything I’ve read, based on the echo results, suggests I have the life expectancy of a mayfly. OK, an exaggeration, but a year seems pretty optimistic, and yet this cretinous doctor wants to see me again in three years (I wouldn’t see HER again if my life depended on it – especially not then!)

      As for a second opinion, it’s taken me 4 months from the day a staff nurse said “Hey Ron, how long has your heart failure been so serious?” to get this far.

      I knew I had slight heart failure – Cor Pulmonale – it goes with the COPD package, but it was barely a minor inconvenience – some nights my feet would be swollen, that’s all. After 4 days in hospital (and prior to the events that put me in there, I was better than I’d been for years), I was, and remain, almost totally housebound.

      I think the chances of a second opinion are somewhere between no chance and zero. I’ll try, but I’m not putting money on it.

      Personally, as I said to Pamela, I’d be happy if I can get to see the echo results – I’ll trust those while I have no confidence in the GP who interpreted them. And that’s something I don’t understand – a GP with an interest in cardiology is still a GP, with all the limitations that implies and, based on her ignorance of the drug I was taking, quite possibly knows less than I do. She now wants to investigate why I’m breathless – I have Stage 4 COPD – breathless is what I do best!! It doesn’t need an investigation. The fact that my heart is visibly malfunctioning – I can stick my finger in my pulse ox and watch the heart trace go haywire pretty much at will – still needs a cause and, hopefully, treatment.

      I’ve also asked, at the hospital, that all correspondence to my GP is copied to me – they actually offered that – so hopefully that will include the echo results. But consider this – the hospital’s correspondence has a backlog of 2 or 3 weeks – just how much use is that to someone diagnosed with a life-threatening condition? They could be dead before their GP even knows how sick they are!

      Ron.

  3. It’s probably a good job I’m not closer; I’m at the point where I feel like going round to your quacks to demand some proper service for you – then they’d find out what the difference between angry and aggressive was. Grrrrr!

    • I would have thumped one guy, had I been well – but not that day! I can well understand, now, why so many hospital staff do get thumped. Based on my experience, the big surprise is that more of them don’t.

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