Doctors I Tried to Believe In
(4)
During 2012, I was still looking for answers and to this end, I visited four physicians and two neurologists (the latter in case there was a neurological cause for my increasing weakness). I spent four days in hospital in May under the care of one of the physicians, who ordered a battery of tests which didn't include a CT scan. If only I'd known then what I know now; that a CT would have immediately pinpointed the problem. Why did he not order a CT scan? Because his opinion was that my fatigue must be caused by a heart condition and he zeroed in on that and looked nowhere else. Sure enough, he did discover there were plaques on my heart so, as far as he was concerned, that was the answer. The fact that most middle aged people will have plaques to some degree didn't enter into it. At this point, my symptoms were made to fit into the scenario that he came up with and no more investigations were entered into. I was to take statins, Aspirin and a blood pressure lowering medication. Take note of that last medication because the fact was I was fainting because of low blood pressure, not high.
I refused to take statins because I didn't believe my problem was a heart condition as I had lost faith in a physician who prescribed blood pressure lowering medication when, clearly, I had low blood pressure.
Forgive me for wandering away from my main point at this stage but I do so because one of the reasons for this blog is to highlight the way patients can be categorised and, at least in my case, it became impossible by now to convince doctors that I had a genuine problem. At this point, the physician handed me to his colleague who read the notes in my file, laughed at me and said, "You're not going to have a heart attack," and ushered me out of his room as though I was what used to be called "an hysteric"! I left, mouth agape! I was the one who had been told by a cardiologist who came into my hospital room just two weeks previously and bluntly told me, "You're looking at a heart attack in the next five years." I was the one who didn't believe this and had been asking for further investigations!
For the next six months, I went from one consultant to another, having already visited an exhaustive list of GPs. I had a Sleep Study; why I don't know but I wanted to show good faith so I did as I was told. The following morning I was given the report of my Sleep Study. Unsurprisingly, I was told by an ernest young technician that I hadn't slept well and had woken twenty two times. It took all my willpower not to ask whether they have any patients who complete the Sleep Study and are told they slept well. With wires attached to several parts of my body and all over my head, a gadget attached to my thumb with a wire attached to a machine on the bedside locker, a camera blinking overhead, the knowledge that I was being watched through a window all night and six blankets piled onto me because the air conditioning was set to freezing point, all of which meant I had to sleep on my back all night, without turning over and with my thumb attached to the bedside locker, I leave it to your imagination what that night was like!
I was written off by another physician as an noncompliant patient! Where to go next, I asked myself. I'd tried naturopaths, GPs, a physiotherapist and consultants in various fields and I was tired. So tired I would fall asleep in their waiting rooms. So tired I became incoherent when trying to give my medical history. So tired I could barely walk yet all of this was ignored.
What do you do when you become desperate? You try anyone you think might listen to you. I was told by a friend about a physician who could "treat anything" so along I went with my hopes high again. "Yes, I can help you," he assured me, as he watched me try to stand up out of the chair opposite his desk, failing to do so and falling back and hitting my head on the wall. Ah ha! This was all the investigational tools he needed. He immediately "knew" what was wrong. I had a very, very rare syndrome, one that very few physicians knew about and only he could treat but, to do so, someone would have to go to the US to buy very expensive medications that I would need for the rest of my life. $40,000 worth each year! Hmmm...... He also "happened" to be, at that precise time, conducting a study into this very syndrome and would like to recruit me as a study participant (in other words, a guinea pig!). I really didn't have to think about this for very long before I decided it was just a little bit dodgy and I would have nothing to do with it. With that he also washed his hands of me.
That was the end of my years of living in hope that I would ever find the answer ~
If you have any questions or suggestions you may email Leapfrog at: positivetrialsblogspot@gmail.com
During 2012, I was still looking for answers and to this end, I visited four physicians and two neurologists (the latter in case there was a neurological cause for my increasing weakness). I spent four days in hospital in May under the care of one of the physicians, who ordered a battery of tests which didn't include a CT scan. If only I'd known then what I know now; that a CT would have immediately pinpointed the problem. Why did he not order a CT scan? Because his opinion was that my fatigue must be caused by a heart condition and he zeroed in on that and looked nowhere else. Sure enough, he did discover there were plaques on my heart so, as far as he was concerned, that was the answer. The fact that most middle aged people will have plaques to some degree didn't enter into it. At this point, my symptoms were made to fit into the scenario that he came up with and no more investigations were entered into. I was to take statins, Aspirin and a blood pressure lowering medication. Take note of that last medication because the fact was I was fainting because of low blood pressure, not high.
I refused to take statins because I didn't believe my problem was a heart condition as I had lost faith in a physician who prescribed blood pressure lowering medication when, clearly, I had low blood pressure.
Forgive me for wandering away from my main point at this stage but I do so because one of the reasons for this blog is to highlight the way patients can be categorised and, at least in my case, it became impossible by now to convince doctors that I had a genuine problem. At this point, the physician handed me to his colleague who read the notes in my file, laughed at me and said, "You're not going to have a heart attack," and ushered me out of his room as though I was what used to be called "an hysteric"! I left, mouth agape! I was the one who had been told by a cardiologist who came into my hospital room just two weeks previously and bluntly told me, "You're looking at a heart attack in the next five years." I was the one who didn't believe this and had been asking for further investigations!
For the next six months, I went from one consultant to another, having already visited an exhaustive list of GPs. I had a Sleep Study; why I don't know but I wanted to show good faith so I did as I was told. The following morning I was given the report of my Sleep Study. Unsurprisingly, I was told by an ernest young technician that I hadn't slept well and had woken twenty two times. It took all my willpower not to ask whether they have any patients who complete the Sleep Study and are told they slept well. With wires attached to several parts of my body and all over my head, a gadget attached to my thumb with a wire attached to a machine on the bedside locker, a camera blinking overhead, the knowledge that I was being watched through a window all night and six blankets piled onto me because the air conditioning was set to freezing point, all of which meant I had to sleep on my back all night, without turning over and with my thumb attached to the bedside locker, I leave it to your imagination what that night was like!
I was written off by another physician as an noncompliant patient! Where to go next, I asked myself. I'd tried naturopaths, GPs, a physiotherapist and consultants in various fields and I was tired. So tired I would fall asleep in their waiting rooms. So tired I became incoherent when trying to give my medical history. So tired I could barely walk yet all of this was ignored.
What do you do when you become desperate? You try anyone you think might listen to you. I was told by a friend about a physician who could "treat anything" so along I went with my hopes high again. "Yes, I can help you," he assured me, as he watched me try to stand up out of the chair opposite his desk, failing to do so and falling back and hitting my head on the wall. Ah ha! This was all the investigational tools he needed. He immediately "knew" what was wrong. I had a very, very rare syndrome, one that very few physicians knew about and only he could treat but, to do so, someone would have to go to the US to buy very expensive medications that I would need for the rest of my life. $40,000 worth each year! Hmmm...... He also "happened" to be, at that precise time, conducting a study into this very syndrome and would like to recruit me as a study participant (in other words, a guinea pig!). I really didn't have to think about this for very long before I decided it was just a little bit dodgy and I would have nothing to do with it. With that he also washed his hands of me.
That was the end of my years of living in hope that I would ever find the answer ~
If you have any questions or suggestions you may email Leapfrog at: positivetrialsblogspot@gmail.com
Bless your heart honey. Wow the more I read the more in shock of it all. Thank God you're still here with us. This journey of yours has been a crazy nightmare to say the least! ❤ 😘 ❤
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