After my hospitalization last summer, I decided to fly to Atlanta to see a specialist and get an ER protocol letter. I figured that being kept waiting in the hospital ER for hours while my muscles digested themselves was more than enough incentive to make sure that never happened again. I still believe that if I had been given a D10 drip immediately upon arriving (which I asked for but wasn't taken seriously), I would have been hospitalized, at worst, for a day or two. As it was, the extra hours of muscle breakdown left me hospitalized for a week.
So last weekend I experienced some shortness of breath. Since Dr. Kendall told me that cardiac myopathy is a possible side effect of CPT2 events, I don't just blow off signs that there might be a heart issue. (Spoiler alert -- things seem fine, will confirm with echocardiogram on Thursday). But I arrived at the hospital with my ER protocol letter in hand, and proudly announced that they just need to put me on a D10 drip and then they could keep me waiting as long as they needed to. Well, that didn't happen. I asked them why they were ignoring the protocol letter and they don't me "we aren't ignoring it, we just don't have space so we can't follow it". Instead they gave me apple or orange juice every 30 minutes. That is in fact not a terrible alternative, but given that the protocol letter was really clear about the importance of a D10 drip, I was really surprised that they took the chance. Yes, it was Saturday night. Yes, they were busy. But I'm willing to bet that I was maybe the 10th FOD patient they'd ever had, and the only CPT2 patient they'd ever had. So it isn't like they knew what they were doing from massive experience.
I even pulled out my trump card: "Please let your risk management department know that you are not following the Emergency Room Protocol letter". The response: "We're too busy to do that".
So I'm not going back to that ER. But it raises the question of what we should do in this situation.
In the meantime, my CK test showed an abnormally high CK level, but not the "above the maximum the test can measure" like it was last time.
Oh, the best piece of advice? I was told that because I was "walking and talking" they put me at the lowest level of urgency. Next time I'm slurring my words and falling over.
Sunday, June 7, 2015
Tremors
I didn't think anything could be worse than Kevin Bacon's performance in Tremors, but I'd rather have to sit through that movie every Saturday night than live with the tremors I'm now experiencing.
This is all new to me. Basically, when I saw Dr. Kendall in Atlanta, she observed some neuromuscular damage to my thighs. When she pressed down on my thighs, there was slight tremor when I resisted the push. My arms and other parts were normal, no tremor.
That has all changed. About two months ago, I started experiencing tremors in my arms and hands. Sometimes the tremors were so bad that I couldn't write or type. I discontinued the statin I was on (Livalo 2 mg), and the tremors seemed to improve slightly, but didn't go away.
There is a lot of stress in my life right now. The patent system has taken four big hits in the past few years (Bilski, the America Invents Act, Myriad, and Alice), each of which either weakened the ability of independent inventors to enforce patents, made them more expensive to obtain, or just did such a poor job of explaining the law that they increased the attorneys fees involved in getting a patent. Since I've primarily worked as an independent inventor for the past decade, you can imagine how this impacts my work and income. At the same time, one of my kids is going through some very expensive and tough times and that's stressing me out -- a lot. Finally, given the finances, I've mostly stopped the hobbies I had been using to destress. [Update 6/8/15: Looks like there is some validation for my subjective observation that patent value and liquidity have crashed in recent years, per this post].
Since we know that stress is a major trigger for CPT2 episodes, I'm left to wonder whether the tremors are an indication that I'm now in a constant state of baseline muscle breakdown. My last 2 CK tests, taken when I wasn't feeling particularly symptomatic, were both several times above normal (of course, several times above normal isn't a huge deal, given that I was hospitalized at several hundred times above normal last summer).
I've tried eating more, exercising less, meditation, medication, less medication, just about everything, and I'm still experiencing tremor. I was at dinner last night with my wife, the kids were in the care of my mom, and I looked down and saw my fingers trembling. It is all very scary and weird.
I'm fairly convinced it is stress, but fairly convinced and convinced are miles apart when it comes to health.
I've been advised to get a brain MRI just to make sure it is not a brain issue. I'm going to do it, but even the doctor recommending the brain MRI is doing it just in case -- we're all pretty sure it is CPT2.
On the bright side, at least the tremors aren't debilitating, and I did learn to use Dragon Dictate for when I have trouble typing. So at least there's that.
This is all new to me. Basically, when I saw Dr. Kendall in Atlanta, she observed some neuromuscular damage to my thighs. When she pressed down on my thighs, there was slight tremor when I resisted the push. My arms and other parts were normal, no tremor.
That has all changed. About two months ago, I started experiencing tremors in my arms and hands. Sometimes the tremors were so bad that I couldn't write or type. I discontinued the statin I was on (Livalo 2 mg), and the tremors seemed to improve slightly, but didn't go away.
There is a lot of stress in my life right now. The patent system has taken four big hits in the past few years (Bilski, the America Invents Act, Myriad, and Alice), each of which either weakened the ability of independent inventors to enforce patents, made them more expensive to obtain, or just did such a poor job of explaining the law that they increased the attorneys fees involved in getting a patent. Since I've primarily worked as an independent inventor for the past decade, you can imagine how this impacts my work and income. At the same time, one of my kids is going through some very expensive and tough times and that's stressing me out -- a lot. Finally, given the finances, I've mostly stopped the hobbies I had been using to destress. [Update 6/8/15: Looks like there is some validation for my subjective observation that patent value and liquidity have crashed in recent years, per this post].
Since we know that stress is a major trigger for CPT2 episodes, I'm left to wonder whether the tremors are an indication that I'm now in a constant state of baseline muscle breakdown. My last 2 CK tests, taken when I wasn't feeling particularly symptomatic, were both several times above normal (of course, several times above normal isn't a huge deal, given that I was hospitalized at several hundred times above normal last summer).
I've tried eating more, exercising less, meditation, medication, less medication, just about everything, and I'm still experiencing tremor. I was at dinner last night with my wife, the kids were in the care of my mom, and I looked down and saw my fingers trembling. It is all very scary and weird.
I'm fairly convinced it is stress, but fairly convinced and convinced are miles apart when it comes to health.
I've been advised to get a brain MRI just to make sure it is not a brain issue. I'm going to do it, but even the doctor recommending the brain MRI is doing it just in case -- we're all pretty sure it is CPT2.
On the bright side, at least the tremors aren't debilitating, and I did learn to use Dragon Dictate for when I have trouble typing. So at least there's that.
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