It might seem odd, from the outside looking in, but the reason for this rolling report is that I firmly believe that the deeply misguided Heart Failure Nurse (hereafter referred to as Denial Nurse) who has persuaded my GP that I don’t have heart failure** is putting me at considerable risk. I am, therefore, publishing what was intended as a record kept for my personal use as a rebuttal. It will be updated several times daily.
If I fail to do so, I’m either in hospital or have a new career elevating Bellis perennis.***
** I’ve written to him setting the record straight, no response so far.
***Pushing up the daisies!
There is no evidence that I don’t have HF, but there is a lot in support of the view that I do – the whole set of symptoms for a start, plus I have two conditions, COPD and aortic valve calcification & stenosis, that predispose me to heart failure (in that either or both could cause it), and, of course, it could happen all by itself, as it does to many people as they get older.
The nurse, like the cardiologist before her, was unsure as to which flavour of HF I have – right-sided or left-sided. The cardio doc who pitched up at my bedside in APH, went to great lengths, with the aid of sketch pad, to show me how it was extremely likely that I had both left and right-sided HF and, of course, my symptom-set bears that out, as you can see (these are the symptoms I have on a daily basis, reproduced verbatim, except for adjustment to British spelling, from the book Heart Failure, by Robert Soufer, M.D. (Yale University), page 180, (Google Books should have a copy, if not, the Mayo Clinic has an excellent article). NB: If, like me, you are well-informed, I’ve found it’s best not to say so as some doctors become resentful. God knows why, I thought a knowledgeable patient would be a refreshing change, but keep your own counsel, you’ll learn more:-
Symptoms of left-side heart failure
Shortness of breath (dyspnoea)
Shortness of breath when lying down (orthopnea) I can’t, in fact, lie flat and breath at the same time – something the numpties at APH seem incapable of comprehending.***see photo at the end of this section
Paroxysmal (intermittent) nocturnal dyspnoea
Accumulation of fluid in the lungs (pulmonary oedema), frequently causing a person to cough up blood-tinged sputum (This is new for me, over the past few months, and indicates a serious deterioration, culminating in my emergency admission recently – to the heart ward, NOT the respiratory ward, it’s worth noting).
Symptoms of right-side heart failure
Dependent oedema (oedema that travels by gravity to the lowest portions of the body)
Enlargement or swelling of the liver (hepatomegaly) (Possible)
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)
***This is my famous clockwork bed , in reality an electric profiling bed, showing the position in which I have to sleep in order to preserve little luxuries, like breathing. The head is often more vertical than that, and the knee break and foot of the mattress are higher when in use, the former to stop me sliding down the bed, the latter to help drain the fluid from my legs while I sleep (something of a two-edged sword, as when it’s very bad as soon as I get out of bed it all rushes back – even stuffed with morphine, the pain is so huge it’s impossible not to scream. I also have a home-made support these days, under my right leg from knee to ankle, to keep the pressure off my ulcer, which I didn’t have (the ulcer, that is), at the time of this photo.
I have since replaced the sports bottle with a hospital-style lidded jug, and banished the pee bottle in favour of the lidded bucket from my commode. I also have a bigger, more robust, over-bed table. Man, I really know how to live!
Denial Nurse tended towards the dual diagnosis initially, before deciding that, no, she really didn’t understand it and, therefore, what she didn’t understand didn’t exist. That my GP then allowed himself to be convinced of this – if that’s true – is an absolute disgrace.
And bear in mind she came to this conclusion in the face of multiple medical opinions from APH staff that not only did I have heart failure, it was most likely a combination of both left and right, and they made it very clear that if I didn’t do as I was told, I would die. Not might die – WOULD.
So what would happen if I believed Denial Nurse, and reverted to my former bad habits, like occasionally drinking far too much, or eating foods which are now prohibited, or stopped taking my HF drugs? I would, on the balance of probabilities, die. At which point she’d doubtless shrug her shoulders and move on to fuck up someone else’s life. This woman is dangerous.
She’s also a tad strange. I have alarms set throughout the day for my meds. While she was here the midday alarm went off, and I took what was due, just Paracetamol and Thiamine – she jumped on that like a terrier on a rat. Did I, she wanted to know, have memory problems that meant I needed the alarms? No, I said, but I do take a hell of a lot of drugs, too many to remember (currently 70 tabs and caps, plus inhalers and solutions, taken in a minimum of 12 tranches throughout the day so, yes, I need reminding), the phone alarms tell me when, and I have a printed list that tells me what, should I need my memory jogged. Usually that’s just for putting up the following morning’s 06.00 batch, at bedtime when I’m tired – working from the list is much faster than from memory.
I intend, therefore, to keep an online and public record of my progress (most recent first, in blog tradition), good or bad because, despite what you might have seen and heard in TV appeals, heart failure can, and does, kill. It can also trigger potentially fatal conditions like pulmonary oedema – that’s what almost did for me two weeks ago.
Note: Before my recent hospital admission O2 rarely dipped below 95%. Since then, never above 92%. Permanent damage? If so, to heart or to lungs? Both?
Weight 85.2kg – retained fluid going down at last.
Who’d have thought this thread would come into its own so soon? Chased out of bed early by an outbreak of bloody sputum at 06.00 as I woke to take my first meds. I know, intellectually, that most of the time this is harmless (well, not harmless but mostly not life-threatening as it was a couple of weeks ago). Still scared shitless though. Angina attack around 08.30. Used GTN spray.
BP 130/73 pulse 75, 02 91% Furosemide (20 + 10), relatively ineffective today.
Weight 86.2kg. New month, same old crap. Breathing very poor (commented on by nurses), walking 6 yards to and from the bathroom wipes me out. Furosemide seems to be working better but, despite Denial Nurse’s advice to restrict my fluid intake, doing what I’ve done from the outset and maintaining my hydration level is more effective at shedding fluid – if I get dehydrated, I retain more. Common sense really.
Furosemide will continue to be taken 80mg at 08.30, and a further 40mg at midday until I shed the fluid my body is grimly hanging on to. If my GP doesn’t agree to this, I’ll buy my own.
Got a cardiology appointment for Sept. 10. When Denial Nurse phoned to tell me she was going around telling anyone who’d listen I don’t have heart failure, I told her that she was screwing up my life and she’d better get me an appointment without delay as, if I didn’t have heart failure we needed to find out what I DID have as a matter of urgency, as it could still be life-threatening. There is nothing good that can come of the set of symptoms that I have.
Still no bread.
BP 133/61, pulse 77, O2 92%. PEF 255, FEV1 1.55
August 31, 2014:-
Weight 86.2kg. A poor day after a bad night. Lungs so noisy last night I feared I was in for a repeat performance of pulmonary oedema but, in the event, nothing but a bad night’s sleep. Today, I have so far (it’s midday), almost fallen at least 4 times. That this happens is normal, the frequency is not.
Breathing sucks, too, as does coughing. While the crap in my lungs is better out than in, the physical stress of constant coughing is harmful – taken a dose of codeine linctus to shut it down.
Urine production is up on what it’s been recently, but still down on past performance. Taken lunchtime 40mg Furosemide again.
Extremely thirsty all day and into the night.
Needed to make bread today, but it’s beyond me.
BP115/70, pulse 68, O2 92%
August 30, 2014:-
Weight 87.0kg. Normal Furosemide taken. Abdomen visibly enlarged, trousers tight (ascites?). Urine production minimal. Problem worsened throughout the day, feet swollen, even the soles, which hasn’t happened since the lymphoedema was at its worst last year. Walking is very difficult and painful – even socks hurt.
Additional 40mg Furosemide taken at midday.
Urine production improved by 15.00 and continued throughout afternoon and evening. No perceptible diminution of swelling. Need to measure and record fluid intake and output. Simply going by what I weigh is hopelessly inaccurate.
Question: Is Ramipril impairing kidney function? It can. Kidney function blood test due next Thursday. Could be in trouble by then.
BP 127/67, pulse 67, O2 92%
August 29, 2014:-
Weight 85.8kg. Took normal 80mg of Furosemide at 08.30. Little or no effect. Urine production less than I would expect without diuretics.
BP 131/68, pulse 70, O2 90%