Chronicles of the Heart – Endgame is coming . . .

But, hopefully, not too soon.

Saw the cardio doc today. His opinion, based on three echocardiograms and a blood test is that I do not have heart failure. I do have a calcified and stenotic aortic valve which, he says, is not severe enough, yet, to cause problems** but will bear watching.

**I’m not buying that. The aortic valve controls the blood flow to the entire body – any reduction in that is bad news, especially for the extremities – areas in which I currently have some problems – and brain. And this is a guy who, last time I saw him, about 12 years ago, denied I had COPD even though, by then, it had been present for 6 years, so my faith in him is less than absolute.

As for the echoes and blood test, I have had, since early 2012 and, most recently last month, doctors telling me I DO have heart failure so for now, at least, I’m keeping an open mind on that subject as, in terms of consultants, it’s currently 2 to 1 in favour of heart failure.

However, assuming, for the sake of argument, that he’s right, I asked him – as I have all the symptoms of heart failure – if that wasn’t killing me, what is.

COPD is, apparently.

I said some days ago that if it’s not my heart then end-stage COPD must be a lot closer that I thought and that, indeed, turns out to be the case.

When I arrived I was sent straight in for an ECG, plus the usual vitals, then in to see the doc. He basically took over where denial nurse left off, as per the first para, then sent me for a spirometry test. Damn near killed me! Seriously thought I was going to pass out.

Eventually got back in to see him and he’d changed completely. Whereas, earlier, he’d been a little confrontational and doctor-knows-best, now he was clearly more worried. And it’s contagious.

He picked up where we left off – it’s COPD not heart. So I said look, if it’s COPD then are you telling me that I’m wrong, and it’s actually a whole lot worse than I think it is? (And bear in mind, reader, that from a patient’s perspective the experience of an illness is entirely subjective – there is nothing outside one’s own frame of reference against which to measure severity.)

Yes.

So it’s closer to end-stage than I thought?

Yes.

Ground drops out from under me…

So, he’s referring me to the chest clinic as he thinks that, as well as COPD, I might have some form of fibrosis (given my history, pulmonary fibrosis is very likely), and he wants to get a scan of my lungs – at this point he threw a bowl of alphabet soup at me; I can’t remember it, but it’s some form of CT scan.

Having done my research, even if he’s right about the fibrosis, there appears to be no medical treatment, the best option being a lung transplant which, at my age, I’m unlikely to be offered and wouldn’t accept if I was. Let it go to someone much younger who can make better use of it.

He also said, with a little hedging, I thought, that my lung function was down to “about” 44% which, frankly, is a lot worse than I expected, but does explain an awful lot. End-stage is, indeed, looming.

There are 4 stages of COPD with, logically, end-stage being Stage 4. With 44% lung function I am Stage 3.

I am not, though, going to let heart failure slip off the agenda. There are still some things that COPD, with or without pulmonary fibrosis, fails to explain that heart failure does,** and as the majority opinion is still in its favour I’m keeping an open mind.

**Like all of these:-

Symptoms of right-side heart failure:-

Swelling (oedema)

Dependent oedema (oedema that travels by gravity to the lowest portions of the body)

Enlargement or swelling of the liver (hepatomegaly) – Possibly

Build-up of fluid in the abdominal cavity (ascites)

Oedema of the skin and soft tissues, causing swelling of the feet, ankles, and legs

Excessive urination at night caused by fluid redistribution while a person is sleeping lying down (nocturia)

And these:-

Symptoms of left-side heart failure:-

Fatigue

Paroxysmal (intermittent) nocturnal dyspnoea

Accumulation of fluid in the lungs (pulmonary oedema), frequently causing a person to cough up blood-tinged sputum

(End)

One of main symptoms of COPD is a cough that you have for at least three months a year for two consecutive years (in my case permanently since the age of 2). Other signs and symptoms of COPD include:-

Shortness of breath, especially during physical activities

Wheezing

Chest tightness

Having to clear your throat first thing in the morning, due to excess mucus in your lungs

A chronic cough that produces sputum that may be clear, white, yellow or greenish

Blueness of the lips or fingernail beds (cyanosis)

Frequent respiratory infections

Lack of energy

Unintended weight loss (in later stages)

Extract (modified), from http://www.mayoclinic.org/diseases-conditions/copd/basics/symptoms/con-20032017?p=1 

(End)

The doc also told me I should stop worrying about my fluid retention and reduce my diuretics. Er, no. I’m sorry, but even if my heart isn’t the cause, fluid retention of the scale I have it is bad news – it can’t just be ignored. Nor is it going to be.

His advice to halve the dose of my beta-blocker is also a bad idea. This was not prescribed for heart failure but for hypertension and a tendency for my heart rate to head deep into tachycardia. It addresses both those problems.

Finally, he’s referring me to an endocrinologist for my Addison’s, something which should have happened right at the beginning – the clown who diagnosed it and kept it a secret should have done that or, if not him, my GP (I’ve poked him with a stick, but to no avail.

So, mostly but not all bad news. Yes, I’m screwed. Am I more screwed than I thought? Ostensibly, no, but if the pro faction is right about heart failure, and I have both that and Stage 3 COPD, plus the aortic valve problem which is indisputable, then all bets are off. But I promise, I’ll try to wait until flowers are cheap. Winking smile 

One last thought – if my heart is enlarged s a result of failure – as it might well be – then it will surely show up on the CT scan of my lungs. It would be good to have indisputable evidence that isn’t subject to interpretation.

And on that note I’m off for a good sulk!

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6 thoughts on “Chronicles of the Heart – Endgame is coming . . .

    • Well, my doctors never expected me to get past 40. In 32 days time I’ll be 70, so I’ll have beaten the odds, at least. A lot of people don’t.

      And I firmly believe that one reason I’m still here is that I treat my meds like a religion – always have. And it does make a difference. Far too many people are way too cavalier with their drugs whereas I take mine to a very strict timetable.

      It can be a pain in the neck – if I go out for more than an hour it means taking drugs with me – but it’s a small price to pay.

  1. Ron you are a braver man than I. Given the many illnesses you have to cope with you still bring a smile to my and others faces. One thing is for certain you have a more in depth knowledge of most of your ailments than some of the quacks you see. Luckily for me my GP( I have known him for 30 years) is a good listener. In his opinion some GP’s are not and therefore get their diagnosis wrong. The same goes for my Thoracic Consultant , always on the ball with CT scans and is a brilliant communicator.
    I wish she would quit calling me Sir Koffalot. 😉
    Ron just keep that important meds regime up, it has worked well so far !

    Oh I nearly forgot … Keep sharing that brilliant sense of humour and cooking skills up.
    All the best Ron. Geoff

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