Thursday, July 6, 2017

Visit to Vancouver General Hospital Adult Metabolic Diseases Clinic

Today was my intake appointment with the Vancouver General Hospital Adult Metabolic Diseases Clinic.

Let's start with the startling:  They know way more than I do about CPT2.  This may not sound surprising, but it is.  My normal routine is to teach my physicians about CPT2.  They then look up more information about CPT2, ask me questions, and eventually get up to speed.  None of that here.  They know this disorder, and I could not be happier to have this amazing resource in my (new) backyard.

I learned a few new things today:

(1) Carnitine (and therefore Carnitor) is associated with increased cardiac risk, and may be a primary mover behind the cardiac risk associated with red meat.  On balance, it is positive for my health to take Carnitor, but for the first time I learned that there is a downside to it as well.  I haven't eaten red meat in 34 years, and learned today that this is actually positive for my muscle health (Carnitor takes care of my carnitine levels, and red meat has a lot of long chain fats that are bad for my muscle condition).

(2) MCT oil in coconut oil form isn't a good idea.  Despite the medium chain fatty acid content, coconut oil has too much long chain fatty acid content to be a good choice.  Instead, refined MCT oil is preferred.

(3) There is a prescription grade MCT available in liquid or powdered form, as a prescription medication.  I'm going to try it.

(4) I don't need to fear protein.  My diet should be as low in fat as possible, preferably at or below 15% (I knew this already), but the protein component is recommended at 15% strictly because of the number of carbohydrate calories I should consume.  Until today, I feared that protein would present renal risk for CPT2 patients.  I was told it does not, as long as my kidneys are currently functioning properly.

(5) Raw corn starch is good for young kids, but in adults it is better to eat complex carbohydrates at intervals throughout the day.  Raw corn starch has little or no nutritional value beyond being a slow release carb.  I find raw corn starch difficult to stomach (literally, it gives me stomach aches), so I'm pretty happy to leave that behind in favor of regular bites of complex carbs.

(6) No more deep fried foods.  Watch out for Chinese food, salads loaded with dressing, and other high fat sources.  I'm letting this sink in.  No.  More.  French.  Fries.  That's a triple sad face, and it is going to strain my willpower to keep it up.

(7) It is possible to have a CPT2 episode without muscle breakdown.  I don't fully understand this, but I guess it is the period between normal and rhabdo when the muscles hurt but still function.  In some ways I have been aware of this, but I never thought of the pre-rhabdo pain as caused by CPT2.  Now I know better.

(8) The Canadian healthcare system is a far better place to have a chronic illness than the US.  There is no fighting with an insurance company to convince them that it is better to test for a metabolic disorder and treat it, instead of waiting until one is hospitalized with it.  The doctors, nurses, and others seem to actually care about me.  Because the doctors are salaried, they can switch between research and clinical work easily, allowing their work with me to benefit other patients.  I can also contact them any time -- and they don't need to worry about spending time on the phone without being paid, because the pay structure doesn't make that a problem.

(9) I need to be far more proactive in managing CPT2 via diet.

I am thrilled that I have this resource two subway stops away from my home.