We ricocheted through the last three weeks, from instant emergency, thrown like a rock (none of the smoothness of a pebble) into our placid lives. We got through and the medical care was good when we finally understood our case.
Bill has heart failure, predicated by atrial fibrillation, which was caused by intense work stress back in 1997. We know that was the cause because his heart was fine in 1996 when he had a hernia op. Seven months later, he had atrial fibrillation. In the interim were months of infighting, scheming and backstabbing, which led to an enquiry and the firing of the Vice-President. He got a package, but nothing gives him back his heart.
We have no quarrel with the medical standard. In fact, Emergency was superb and we left as confident and comforted as we could be after a body blow.
But the follow up! Have doctors never factored in the nocebo effect of their manners? Think witch doctor, death wishes. The opposite of a placebo, which works even if the medication is useless because we have faith in it. And that comes from the person who administers it. There are many documented studies of the different responses of patients given meds by an optimistic versus a negative doctor
There's even one of a lab experiment on rabbits. Although they were all given the same experimental meds, one group flourished, while the others faded away. There was one small difference: the technician looking after the healthier rabbits petted them each day.
We did not feel petted! Why are they all so cheerful when they give you bad news? “You've got heart failure, quite bad heart failure,” said our GP ebulliently before the door was even shut.
An earlier time, another GP told Bill after an MRI scan, “You've not got a brain tumour.” Our relief lasted 30 seconds before she went on, almost with relish, “But you've got something very nasty in there, behind your nose. I tell it how it is.”
The problem was, she didn't know. Two days later the ENT specialist laughed, “It's only a nasal polyp.” And how many years off our lives? Then last year my thyroid needed a biopsy. There was a four month waiting list.
“Don't worry,” the endocrinologist said cheerily. “Thyroid cancer is very treatable.” The biopsy was normal, but my body had been bathed in cortisol while we waited.
My point being that in neither case did they KNOW. I understand we all have to be told everything, but I would rather NOT until they are sure and can tell you what they can do about it.
It was a different, but no less disquieting story at the heart clinic. Shaken, we presented ourselves. The cardiologist beamed paternally. “Now, tell me what happened. What did they say was wrong with you?” Didn't he know? What about all the tests done in Emergency?
“Don't you have a report? Bill faltered.
“Oh, it comes in in bits and pieces. It's easier if you tell me.” Is the diagnosis going to be dependent on our terrified understanding? I now know that it is standard practice to ask the patient. It gives the doctor an idea of what we know. But it does nothing for our confidence.
Apparently, he doesn't think it's a heart attack. He sends in the heart failure nurse. She, at least, says comfortingly that failure is too strong a strong term. But they don't know the extent of the damage. That will be shown on the echocardiogram to be done later that morning.
How will we know how bad it is? “I'll phone you?” “You give a diagnosis over the phone?” I ask, aghast. What, no calming interview with the cardiologist?
The call came the next day. An ejection rate (the force the heart pumps blood) of 27. Anything under 40 is heart failure. Even we knew this was bad.
Bill was told to double his medication. Was he twice as bad as they expected?
I asked if they knew the cause. “I don't know and the doctor doesn't know. Take the medicine.” Are we adrift on a sea of unknowing? When will they know? How will they know?
“Do you do a catscan,” I suggest, hopefully – something suggested by a cardiac surgeon friend. No, but we are to return in two weeks. The cardiologist will be away, but we will see the nurse.
Two weeks of dread, confusion, frantic internet searches, with depressing results. We keep cheerful, desperately. It was the first time in our marriage we weren't honest with each other.
“My father had heart failure at 70,” volunteered a friend. I saw Bill's face fall in anticipation. “And he live to 96.” Up and down, we roller coasted through two weeks.
Our daughter has a friend with heart failure – and she started with an ejection rate of 12! Last year it was back up to 36. Still heart failure but, in our new world, a dizzying height – almost a pass. And she toured Europe last summer with two kids!
Two weeks later, the clinic appointment. This time, attention to detail, a painstaking examination. Echograms back to 2000 have been combed. Bill was told he hadn't had a heart attack and why (blood tests and no scarring on the heart). It was unlikely to have been a virus as no other signs. Then she traced the heart's history through the echograms, each inching Bill nearer to failure. To be fair, the only meds for prevention were beta blockers. These made Bill exhausted and shivery and did nothing to improve his heart, which at that point had an excellent ejection rate of 70.
She added more drugs: a low dose beta blocker (fingers crossed) and an anticoagulant. Thank goodness not Warfarin, which is notoriously difficult to regulate, requiring frequent blood monitoring, care not to cut oneself, and no green vegetables.
Bill looked it up glumly the night before the clinic, “There's nothing left we can eat!” I am gluten and dairy-free. Bill is now salt free, which includes no cheese, olives, pickles, stock cubes. Take away green vegetables, asparagus, cranberries. 50 shades of rice?
As a friend said, “Take away all the healthy food and fill you with rat poison?” I remembered an exasperated cardiologist wanting to prescribe anticoagulants back in 2000. Bill displayed nicked, scabbed hands, pointing out he spent his days chopping wood. “If you must live a healthy lifestyle, then I can't put you on warfarin!”
Our son, bless him, after an agonized whispered call from me (Bill, shell shocked after our GP was in the bath, and I didn't want to hear me worried) worked late into the night researching alternatives. “You'll have it by breakfast, Mum.”
We returned from the clinic feeling less scared, reassured that action was being taken. The bar has moved – less frightened is now optimism. Yes, we finally understand Bill's situation and he is getting treatment, but what has terror cost his heart?
Mind over Medicine: Scientific Proof that You Can Heal Yourself by Lissa Rankin. MD. A wonderful book that gives hard evidence about the nocebo effect in current medicine. What's more, she gives valuable advice on setting yourself on the road to self-healing.