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!