It had been a difficult second encounter with Dr. ___, my primary doctor’s associate – much as the first time he had been Dr. Clement’s substitute.
But the exchange that I’m pretty sure really popped his cork – and I knew he would have to ask the question and expected he would take my answer badly – was when he asked,
“The blood thinners that Dr. Clements prescribed for you for your superficial blood clot – have you started taking them?”
“Why not? He prescribed them six days ago.”
“Because I’m just not getting a ‘yes’ about taking them.”
“I’m just not getting a ‘yes’ to adding that new drug. I’m already taking several meds, including three psych meds – which I really never felt good about, but was in so much pain that I desperately was ready to take anything that the psychiatrist gave me. I’ve never felt good about those three and am – working with my current psychiatrist – beginning to wean myself off them and intend to get rid of all three. I’m not going to add a new drug unless some inner wisdom in me says I should. So far that hasn’t happened.”
I really believe that the idea that I would give more precedence to my inner knowing than to “doctor’s orders” was completely incomprehensible to him. But to me, it is the absolute bedrock of not being a helpless pawn in the (very fallible) doctor’s hands. If I don’t give myself responsibility to make the best-informed (including informed by my intuition) decisions about what treatments to accept and what not – if I don’t do this, then I am just not doing the admittedly hard work of taking responsibility for my body and my health. If I don’t get a ‘yes’ about this drug or other treatment, I ain’t doin’ it – “sorry, doc, but that’s my real bottom line.”
“Dr. Clements obviously thought you should take it – or he wouldn’t have prescribed it.”
Me: “The inpatient doctor, who a week ago found the blood clot, thought differently. He specifically ruled out a blood thinner. He said, ‘For a blood clot, you will often take a blood thinner. But for a superficial blood clot like this – where there is no danger that it will ever break off and travel to your heart or lungs – we don’t use blood thinners. We prescribe baby aspirin, compression socks and elevating the leg. It won’t take too long for the clot to dissolve itself.'”
Doc: “Here is the danger if you don’t take the blood thinner” – and he “patiently” gave me some arguments for the drug, which reasoning I actually found a little cogent – even in the face of my continuing felt resistance to going ahead and taking it.
Me: “What you are saying makes some sense to me” (and it genuinely did) – “I will take it into advisement as I try to decide if I am ready to take the medicine”. “I will take it into advisement…” – I really sensed that this kind of language was absolutely not the kind of response he expected from a “patient” – who by definition is expected to be passive.
But my confidence in my own inner knowing about this drug decision was honestly a little dented by his arguments about how I was putting my health at risk by not following the doctor’s “advice”…orders. “What if I have a heart attack and die because I wasn’t willing – on no basis but my own intuition – to take this drug? That would be a bad thing.”
I still was not getting a “yes” on the blood thinner when, two hours later – having just told Dr. ____ that I was no longer feeling any pain in the foot – I was walking the dog and the pain in my foot started to come back. By the next day, the pain had become very strong, I was limping, my right hand and foot were numb and I felt really lousy all over. Because both of my feet had continued to be numb each morning in the seven days since I got out of the hospital (with no one claiming that the infection was gone – just enough improved that it seemed likely that taking an oral antibiotic, instead of the more powerful IV antibiotic that was the primary reason for keeping me in the hospital, would finish the job of knocking out the infection.)
On this particular Thursday, the fact that my symptoms had never fully stopped – combined with all these symptoms that had come on in a rush that day – made me fear that the infection was again gaining the upper hand. I had seen my step-brother die of basically a cold after his system was weakened by a kidney transplant. And my friend John – who was staying with me at the time, so his whole medical drama was up close and personal – had almost died from a cat bite infection. Even though he was going back to the hospital daily for an hour of IV antibiotic, they just could not get the infection fully under control – and never promised him that he was actually going to make it. Certainly his experience was that he shouldn’t make any long-term plans, before finally – after a full month – his infection did completely go away.
On Thursday night at 12:30 a.m., after I had dropped off my devoted dog to our neighbor-in-our-building Angie and had used the magic words with little Pancho, “I’ll be back”, I was bushwhacked by an emotion I didn’t know was there: I said to Pancho, weeping, “I think I’ll be back.” I’m weeping again now, just remembering the poignancy of that moment. Out in the hall a moment later, I said to myself, “Get yourself together – we’ve still got shit to do here.” And I did.
I followed through on the plan I had made up in my apartment on the fifth floor. I didn’t want EMT’s to come up through the building, so I would go out to the front porch, call 911 from there (I really just was not up to painfully limping the two blocks to my car) and instruct the dispatcher, when they dispatched the ambulance, to ask the driver not to use sirens or flashers when they approached the building. The dispatcher reassured me that – for this kind of situation, at this time of night – what I was asking would be the routine procedure.
About two hours later, my ER doctor asked me if I was on blood thinners for my diagnosed “superficial blood clot.”
“No, my doctor prescribed them, but I haven’t started them.”
“Good – don’t start them. We never recommend them for this kind of superficial blood clot, which is no kind of danger. The hazards of the drug outweigh any possible benefit.”
I’m not really looking forward to repeating this exchange to my real doctor, David Clements, when I have the ER-prescribed follow-up with him, “within a week maximum” – next Monday. Clements really is a good guy, who I have no real desire to defy – but then he always has behaved with me in a collaborative manner, never has attempted to strong-arm me about anything – and I have never seen him get his back up when I expressed my opinion or myself acted as a peer to him.
When I called the Carolina Internal Medicine office, to schedule this follow-up to my ER visit, I said to the scheduler, “Please enter into my chart that – except in an emergency – I am not willing to be treated by Dr. _____.”