I’ve been trying to write this for a week or so now, without much success, because I wanted to try and explain my feelings about events following my fifth deep-vein thrombosis [DVT], and how deeply I have been affected by them without being too ‘dramatic’. But the [very one-sided], conversation I have written below is more-or-less, as it occurred. I wish it had never happened, because now, I’ve been frightened. Frightened because I can no longer trust the doctors treating me.
Up until the beginning of August, I was taking a new[ish], anti-coagulation drug called Rivaroxaban, and was highly delighted as the doctors prescribing it had guaranteed [virtually], that I would never get a clot again.
That, to me was such an immense relief that is hard to describe. The weight of at least one of the six medical conditions I have had been taken from my mind: or so I thought…
“I don’t believe you either,” said the consultant sitting next to his desk in the room he’d commandeered in the outpatient department for that afternoon’s clinic.
There was a student doctor, or trainee of some sort sitting in – with my permission – and the usual nurse, observing at the back, against the far wall.
I was utterly horrified and deeply shocked: I had just explained that I had been told that on hearing I’d developed my fifth DVT, the Haemotologist in charge of my anti-coagulation had stated, categorically, that I could not possibly have been taking the new anti-coagulant drug that I’d been prescribed: Rivaroxaban. I’d further explained how hearing that had upset and worried me and that the doctor had only meet me face-to-face two or three times in as many years.
This Rivaroxaban had been prescribed at the beginning of 2014 following my fourth DVT, which had developed last December and following the ‘umpteenth’ bout of cellulitis in my left leg and, whilst I was taking Warfarin [probably the commonest anti-coagulation drug used today]. Rivaroxaban has been used for some time in hospitals to prevent DVTs in patients recovering from operations which would leave them relatively immobile for a time. It has not long been used to treat outpatients like myself who suffer from repeated DVTs occuring for no apparent reason; especially those who appear unresponsive to Warfarin.
Back in January, I’d been in to the hospital to meet with the anti-coagulation nurse to receive my ‘lecture’ about Rivaroxaban: including stuff like the fact it has no antidote should I overdose, how it must be taken regularly with food and so on.
Surprisingly, I had to sign a ‘disclaimer’ stating that I’d had this mandatory ‘lecture’ and also agreed to take the [probably slight], risk of taking the drug. I never expected or even realised that there may be times when patients might have to sign disclaimers to receive drugs. But still.
So, here I was, hearing another doctor essentially calling me a liar: this time to my face.
Exactly one week previously, I’d been to see the specialist anti-coagulation nurse in the afternoon following an ultrasound scan that morning which confirmed my very real fear that the main vein in my left leg was once more a mess of clots. She told me she’d spoken to the consultant, who had stated I hadn’t been taking the Rivaroxaban; and how she’d defended me and told him that of all their patients, she was certain I would have been taking the prescribed drug properly.
She was absolutely correct: I had taken the Rivaroxaban every single day since it was first prescribed. Religiously and without fail.
This nurse is just one of quite a few in our local hospital who probably know me fairly well by now. I have had blood samples taken, treatments and general nursing care given by them as both in- and outpatient over the past 7 years or so. It has been a natural thing, getting to know them and vice-versa. I probably average one visit a week over time, and sometimes, as at the beginning of August, I may attend every day. There is also the fact that many of the hospital staff are very aware of me from following my family’s bedroom tax story.
Despite being questioned by someone who knows me, the consultant refused to change his opinion: I was not taking the Rivaroxaban.
I had not, however, anticipated the second consultant, also a Haemotologist, who deals with my Polycythaemia disbelieving me.
My shock was profound and I very nearly completely lost my temper in anger and frustration. I couldn’t help raising my voice though.
I told the doctor in no uncertain terms what I thought and how he, and his colleague, had made me feel. I was both desperately upset and quite frightened now.
“I’ve never missed a single dose of Rivaroxaban,” I told him, “yet you call me a liar to my face and in front of a student too? Who the hell do you think you are? I’m fully aware that any DVT is a potentially life-threatening condition. I’ve had two pieces of clot break off in the past, as you know, causing me Pulmonary Embolisms [PEs], and the second one occurred while I was at your clinic, when I collapsed and was rushed to A&E for immediate treatment.
“Do you think I want another? I’ve been told that with my lung condition I’m lucky to have survived the ones I’ve had. Do you really think I want to die? Do you think preventing a life-threatening condition means nothing to me? If I want to kill myself, I have a large bottle or two of Oramorph and probably over a hundred slow-release Morphine tablets at home that I could eat and drink. That would be a lot less painful and more certain than trying to make a clot occur. I don’t play Russian roulette with my life!”
He literally sat in stunned silence. The student was intently studying her shoes and the nurse smiled wryly, knowing I was right. She may even have been enjoying my outburst.
But I hadn’t finished yet.
“You may think I enjoy playing Russian roulette, but I’m telling you right now, to your face, I think it is you and your colleague who are playing that with my life. And it scares me.
“You take the ‘easy’ option. You show how little you care by dismissing me like that. You choose to call me a liar rather than wonder what may have ‘gone wrong’, or why I developed this clot while taking the ‘infallible’ Rivaroxaban. I know it costs £2.10 a tablet and is expensive compared to Warfarin and I also know that in the clinical trial results presented to the National Institute for Health and Care Excellence [NICE}, that around six people taking Rivaroxaban developed clots.”
“You know that do you?” He managed to speak at last.
“Yes, and a lot more besides,” I continued. By now I couldn’t stop. I felt that if I did, I’d just burst into tears. I felt like I was going mad. “I never take a drug until I’ve researched it as much as possible on the internet and by asking medical people I know, at least one of whom is far more qualified in the physiological chemistry and micro-biological effect of drugs than you are.”
The thought occurred to me at that point that perhaps I was now verging on just being insulting or perhaps arrogant, but I dismissed it. I no longer cared.
As far as I was concerned, and still am, these doctors who I had completely trusted, literally with my life, had demonstrated most clearly that they had no concern for me whatsoever. There was and is, no way they can ever convince me otherwise.
“Don’t you think I want to know why I got this new clot?” I asked. “You don’t want to investigate the reason, do you?”
He looked back as sheepishly as a young child being scolded. His eyes told me he now realised I’d been telling the truth and what he’d said was a mistake. But it was too late. Its a very different level of emotion to experience when it is your life at stake: of that I’m certain. This was far, far more serious than discussing treatment for a cold or broken bone perhaps?
“Don’t you think the drug manufacturers will want to know?” I went on.
“Perhaps the clot was caused by one of my other drugs interacting with the Rivaroxaban? Perhaps it is something utterly stupid like drinking too much coca-cola or eating too many chillies? Perhaps I have some underlying blood-condition that predisposes me to excess clotting? You’ve never tested me for anything like that, but whatever it is, don’t you think I need to know?”
He sat gaping at me. I doubt he’d ever been spoken to like that before. I doubt many doctors are because of the way patients, myself included, often inexplicably feel somehow ‘inferior’ [if that’s the right word?], to them. I almost felt sorry for him and took absolutely no pleasure at all from knowing that I’d hurt him.
“I took those tablets every single day,” I said quietly. “But to you, I’m lying. That has made me lose all the faith and trust I had in you, so I’m going now.”
With that, I stood, adjusted my oxygen backpack, took my crutch, apologised to the student, smiled at the nurse and walked out.
Up until that day, I had one hundred percent trust in the NHS and all the doctors I’d been in contact with. I still think I have faith in the NHS, but now I know, beyond any doubt whatsoever, that I will question every clinical decision made about me.
I will question every doctor with whom I come into contact, because now I have seen and, sadly, experienced for myself something that I had only heard or read about before: that doctors can far too easily become complacent and believe exclusively in their own clinical expertise or judgement.
For a doctor to call a patient a liar, to not suggest further potentially life-saving tests, all because they believe they are infallible is a very, very dangerous place for the doctor to be.
It is perhaps, even more dangerous for their patients.
This story is ongoing. I will update it as and when there is something to report.