This is my first post under the new rules,** so if reading about my medical problems is liable to upset you at all (and I know some of you will be), then stop at the line.
**Missed them? Find them here. I know I said posts under the Chronicles or Bed 3 titles would address heart failure and COPD respectively but, of necessity, this one contains both.
Fluid Retention is a huge problem.
So far, this week, my weight has gone from 85.1kg to 88.4kg (yesterday), and today is down to 87.2kg.
Fluctuations on this scale can have only one cause – fluid retention at a pretty serious level.
Now, thanks to further research, I know that COPD can cause fluid retention – to a degree – and is usually described in the literature as causing swollen ankles and feet. Given that 3.3kg of fluid (the difference between maximum and minimum weight this week), is equivalent to 3 litres or more (if it were tap water it would be exactly 3.3 litres), if my feet were that swollen I’d need clown shoes. But my feet are only slightly swollen (pitting oedema). This fluid, as far as I can tell, is in my abdominal cavity (ascites), as witnessed by my ever-expanding waistline (my trousers can go from loose to painfully tight and back to loose in a matter of days). Conventional weight gain – flab – doesn’t, indeed, cannot, do that.
This level of fluid retention is indicative of heart failure.
The consultant I saw on Wednesday, as you might know, is in the denial camp. However, when I asked him to explain how, if I did not have heart failure, I could possibly have the almost full set of symptoms, he failed to give me a straight answer, just blaming COPD.
That’s all very well, but these days anyone with a broadband connection can access the COPD literature from many reliable sources, and see for themselves what a crock that is. I’m sure many, if not most, doctors forget this or – and this wouldn’t surprise me – assume that their patients are too dumb to do that or understand it if they did. That, sadly, based on observation as an in-patient, is all too often true (hey, the only entertainment, very often, is listening to the interchange between doctor and patient and most patients are so clueless it’s scary).
So, anyway, I got into the literature on COPD and, as I said, it can cause fluid retention but, on this scale? No, I think not.
In addition, I have to ask why, last month when was admitted with pulmonary oedema – a symptom of heart failure but not, apparently, of COPD – I was told with absolute certainty that I had heart failure which was so severe my life was at risk.
This list of COPD symptoms is taken from the Mayo Clinic’s COPD pages – other sources are pretty much the same, none list pulmonary oedema:-
Symptoms of COPD often don’t appear until significant lung damage has occurred, and they usually worsen over time. For chronic bronchitis, the main symptom is a cough that you have at least three months a year for two consecutive years.** Other signs and symptoms of COPD include:
- Shortness of breath, especially during physical activities
- 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)
**In my case I have had asthma and bronchiectasis since the age of 2, after measles and whooping cough trashed my lungs – no vaccine in the 1940s. This meant a permanent cough for 50 consecutive years.
COPD – and its precursors – can cause bleeding from the lungs, as out-of-control coughing can all too easily pop a vein. This manifests, for me, at least, as a splash of bright, fresh, blood, or bruise-coloured sputum from a slow leak that accumulates in the lung before being expectorated. It does not cause the lungs to fill up with fluid and fresh blood, to be expelled as bloody, possibly frothy,** sputum, causing me to fight for every inhalation and feel as if I’m dying. And I very nearly did.
**Frothy is the usual description for pulmonary oedema, but in my experience – and I’ve had over a dozen bouts by now, including the one that put me in hospital – frothiness has been absent. I’ve simply been overwhelmed by the sheer volume.
To sum up, then, there is a substantial body of opinion in favour of heart failure, and it goes back a long way. I have the necessary set of symptoms to support that opinion, and most of those symptoms do not occur in COPD.
I do not dispute that I have Stage 3 COPD – there’s no arguing with the numbers and under 50% lung function means Stage 3 – I have 44%. What I do dispute is the refusal to accept that I can also have heart failure.
COPD Stage 3 does NOT preclude the possibility of HF, in fact it pretty damn well guarantees it. I was diagnosed with “emphysematous changes” in my lungs (i.e. early emphysema, which makes a diagnosis of COPD inevitable at some point), in 1996. I was also told I, around the same time, that I was showing signs of Cor Pulmonale – right-side HF (my heart was enlarged enough for the change to be visible on a chest x-ray), and, indeed, discussed this at some length with my GP.
If I had it then, I have it now – IT DOES NOT GO AWAY! And, of course, it will be worse now than it was then – that’s the nature of the beast.
Whether or not I have left-side heart failure is not up for debate either, my symptoms support the diagnosis as does the cardiologist I saw in 2012.
Again, if I had it then, I have it now – IT DOES NOT GO AWAY!
And, of course, heart failure accounts for my constantly-worsening leg ulcer. That or some previously unsuspected circulatory problem, but why look for that when we have a cause for the clearly-visible effect?
In addition, the doc confessed himself mystified by my calcified and narrowed aortic valve. Three years since diagnosis and, he says, it’s no worse, which he doesn’t understand. Yet this is a degenerative condition, and age-related, getting worse is what it does best! So why isn’t mine? Am I being told the truth? I have no idea.
And finally, there was the doctor in APH who was absolutely adamant that I have both left and right-side HF, and explained – with diagrams – how the former caused the latter, and how the two reinforced each other and how, basically, I’m screwed.
That – and I know some of you don’t understand me on this – is the sort of honesty I appreciate and expect from my doctors, and only very rarely get. I’m not the sort of weirdo who revels in bad news, it dismays me as much as it dismays anyone else, and I accept that some people can’t deal with it. I can, and I expect nothing less than the truth.
I feel – as I’ve said many times in the past few weeks, as if I’m dying. My clockwork is running down, my batteries are going flat – choose your own analogy – either way, rightly or wrongly, I feel I don’t have long, and I really do need to know if I’m right.
Or, of course, wrong…
Given my quality of life, however, I wouldn’t be too disappointed to be right. Clue – there isn’t any quality at all, I’m stuck in this dump.
In three months the only times I’ve been out were when I was dragged off to APH for a week and damn near died, and again two days ago for a hospital appointment.
That’s not a life – that’s fucking purgatory.