Friday, May 7, 2010

Who's the Expert?

I saw my normal CF team on Monday and woo hoo no insulin.  Actually, it's more like no insulin for the next six weeks.  I'm supposed to monitor my sugars and then we'll discuss what to do at my next appointment.  Apparently, falling asleep right after an injection is not a normal reaction.

Also, my A1C is at 6.1 which means I'm pre diabetic, not diabetic.  At 7.0 I will be diabetic.  So I'm not really sure why the doctors in Stanford put me through so much headache.  I am aware that if I go through with having a transplant, I will become full blown diabetic.  So that is something to think about.

My weight is down.  So it's back to increasing those calories, all the while trying to get back into shape.  Not an easy task.  My doctor said that if the insulin wasn't putting me to sleep, he would recommend my staying on it for the weight gain (insulin can be used as a growth factor).  But falling asleep makes it hard to work out :o)

My PFTs are up by a smidgen.  But they are up.  So that's good news for me.  And to top it off I get to start Cayston!  I have to wait for it to be delivered, which I was warned it can take a couple of weeks.  But I get to start it.  Hopefully, it'll put off my needing a transplant for a while longer.

Some bad news.  Someone got the crazy idea that the FDA should approve the pancreatic enzymes that most CFers need for proper food digestion.  Problem is, not all brands are created equal.  I spent years trying different brands until finding Ultrase.  Ultrase is the only one that works for me.  With other CFers, it's the same thing.  They have a specific brand that works the best for them.  The FDA has only approved three brands and Ultrase is not one of them.  I have about two weeks left of my enzymes and then I'm going to have to switch to a brand that is sub-par for my body.  This really sucks.

I guess someone from Stanford complained to Davis that I act like I'm the one running the show.  It's kind of funny really.  What adult CFer does not act like they are running things?  We spend so much time at appointments, in hospitals, having to monitor ourselves that we know what's going on.  Sometimes before the doctor even figures it out.  A doctor's power is dependent on the patient's willingness to adhere to the treatment plan.  I'm not going to go through with a treatment unless I fully understand what it is for, what the side effects are (long and short term), and what symptoms I need to look out for.  Doctors may be experts on the disease, but we are experts on our own bodies.