Do I have heart failure? Who the hell knows?

There is, it seems, no shortage of people willing to fuck up my life. As you might know, I had an appointment with the Heart Failure nurse. The letter which follows is going to my GP – it is self-explanatory. Names have been redacted so as not to give the bastards any excuse.

 

August 28 2014

 

Dear Dr. Xxxx,

I have had a staggering phone call from Heart Failure Nurse Xxxxx, to tell me that neither you nor her believe I have heart failure. Frankly, that beggars belief.

Dr. Xxxx is convinced that I have. As am I – I have lived with this condition since early 2011 – I have no doubts. Because, if not heart failure, then what?

My health crashed in flames in 2011. I have never recovered. I was diagnosed with heart failure while admitted with pneumonia (Dr. Xxxx, as far as I know). I was told this verbally, as in:-

Staff nurse (writing up her notes: “Ron, how long has your heart failure been so bad?”

Me: “Huh?”

And that’s where it ended – no mention of heart failure can be found in my records (I have a copy, allegedly unredacted, under an FoI request.)

Eventually referred to Dr. Xxxx at Xxxx, she spent half an hour telling me why I couldn’t possibly have heart failure, before deigning to pick up her stethoscope and listen to my heart – cart before horse, much?

Result, a panicky scramble for paperwork and an urgent echocardiogram. Came up with a calcified and stenotic aortic valve. Dr. Xxxx still firmly set against the idea of heart failure. (That, plus COPD, gave me two conditions that can potentially cause heart failure – on the balance of probabilities I suspect that might make it more likely than not.)

Fast forward to early 2012, and an appointment with Dr. Xxxx We had a long talk, during which he was quite clear – I did have heart failure but he was uncertain which type. He even recommended websites via which I could pursue my online research and, when he suggested a double catheterisation of my heart, crossing the damaged aortic valve, I followed his advice and checked it out.

What I found was that crossing the valve was considered dangerous (see** below), and that the procedure carried a high risk of stroke, 24% if memory serves, which I considered too high for a diagnostic procedure, and still do. There were, though, safer alternatives that would yield the same information, and that was what I asked for.

I also, at the time – I was very ill as, indeed, I still am – had to pull out of two other appointments (one of them wanted me at APH at 09.30 on two successive days, and one late afternoon – both impossible due to the fact that I had – and still have – a very narrow window of activity around late morning – early afternoon. I explained this to Dr. Xxxx in detail. I heard no more.

So, since then I have believed – and still do – that I had heart failure. Cardio doc in APH a week ago thought so too. Is everyone wrong except the H.F Nurse?

I talked to Ms. Xxxx at length this morning, and she couldn’t understand which type of heart failure I had either. She did tentatively suggest that I might have elements of both left and right, and a look at Heart Failure, by Robert Soufer, M.D. (Yale University), page 180, (Google Books has a copy), seems to bear that out. In the list of left and right-sided symptoms, most are a perfect match for what’s happening to me, especially the past few months, and the event that put me in APH close to death (so I was told and I have no reason to doubt it), two weeks ago:-

Symptoms of left-side heart failure

Fatigue

Shortness of breath (dyspnoea)

Shortness of breath when lying down (orthopnea)

Paroxysmal (intermittent) nocturnal dyspnoea

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

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) (Possible)

Buildup 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)

(end)

So, I ask you again – if that’s not heart failure, then what is it? If it looks like a duck, walks like a duck, and quacks like a duck – pretty good odds it’s actually a duck, don’t you think?

How much risk am I at because, if not heart failure, is it something more dangerous – or less?

In 1986, on a weekend backpacking trip to the Peak District, I suffered my first angina attack on the ascent of Hollins Cross between Edale and Castleton (with my lungs, a major challenge). Two days later, striking camp at Edale, I had another, which earned me an ambulance ride to Stockport infirmary. They did a battery of tests and decided that it was oxygen-deficit angina, and gave me a letter to that effect for my GP. I gave it to Dr. Xxxx who rubbished the idea.

Since then there has been a belief at Xxxx that I imagined heart disease because there is a family history of CHD. Or because I was mentally ill (a self-fulfilling prophecy, as it turned out), or I was working a benefit scam. There is, I was told (Dr. Dunne, Tranmere, 1988ish), a scurrilous note to that effect on my file. It is a lie. My wife, sadly, believed the lie – your predecessors cost me my marriage and, ultimately, my mental health.

And here we are, 28 years down the line, and nothing has changed.

Yours sincerely,

 

 

** Editorial: The Journal of Heart Valve Disease 2004;13:344-346

Crossing the Aortic Valve in Severe Aortic Stenosis: No Longer Acceptable?

John Chambers, David Bach, Jean Dumesnil, Catherine Otto, Pravin Shah, James Thomas

Working Group on Echocardiography, Society of Heart Valve Disease

and

Should we cross the valve: the risk of retrograde catheterization of the left ventricle in patients with aortic stenosis

•Trip J Meine, MD , J.Kevin Harrison, M

Advertisements