Saturday, January 28, 2012

Chapter 5: In which Janet is just one step removed from a lab rat

Boy, it's been awhile since I've posted. I am happy to report that I'm feeling better. Not 100%, but back in rebuilding mode.  I have a lot of ideas I could write about, but today I'll tell you about a clinical trial I signed up for.

The GI doctor at Stanford is good. She slapped me into the hospital on the spot when I went for my first office visit. I got stabilized, and pumped full of electrolytes and fluids. I was there for 5 days, getting out just in the nick of time*. Anyway, they also did some tests, like 4 different blood draws, an endoscopy, and a stomach emptying study that involves eating radioactive scrambled eggs and then getting scanned every hour for 4 hours.

No surprises really. I had some shallow ulcers in my stomach, likely from being sick so often and over a long period of time.  So I'm on Prilosec to manage the acid. I'm still off coffee and alcohol and spicy foods too, so I plan to let my tummy heal up thoroughly before I jump into my vices again.

Also no surprise that my stomach didn't empty very fast. I've had intermittent gastroparesis (what they call it when your stomach doesn't empty) for over 10 years. But usually mild and I really haven't had to make any permanent lifestyle or eating habit changes over the years. Well, the plumbing has been pretty much backed up to a standstill over these 3 months or so.

According to the GI, there are a lot of overlaps between gastroparesis and cyclic vomiting syndrome (CVS).  I'm taking a drug to prevent migraines which will hopefully remove at least one trigger for a CVS episode.  Otherwise, the treatments are more of less the same in terms of anti-nausea and anti-emetic drugs.

Currently, we are mostly addressing the gastroparesis - although there aren't really good treatment options out there. I react badly to the most common treatment, Reglan. I took some antibiotic that promotes motility in the stomach, but it only works for 2-3 weeks.  I'm using Iberogast - a tonic that has a bunch of different herb extracts in it - it does seem to help. And digestive enzymes from Trader Joes.  And Dr. Who is also addressing gastroparesis and general digestion with acupuncture and Chinese herbal formulas (which taste nasty if you ask me).

Are you bored yet? Wondering where the hell the lab rat is?

WARNING: This content contains science geek information that may or may not confuse or interest you. 

I signed on for a pilot clinical trial at Stanford for a different/new drug to treat gastroparesis. I don't say "new" because the drug already is approved for treating phenylketonurics (PKU). It is a co-factor for an enzyme that can lower Phenylalanine levels in PKU patients.

This drug is also a co-factor for nitric oxide synthases (NOS) - and without getting too scientifically confusing, let's just say that NOS abnormalities are found in gastroparesis - the NO is needed for the action of the smooth muscle in your stomach.

Gastroparesis is also more common in diabetic women, and there is a gender difference in the NOS malfunction. In lab rats. (oh, that figures, right?)

So, I signed up for a pilot study to test the drug in humans. Are you as excited as I am?!  Seriously, this will at least make things interesting for me.  It was really strange being on the other end of an informed consent after working from the diagnostics and pharma clinical trial side.  They are recruiting 20 diabetic women who've had diabetes for at least 5 years and have moderate to severe gastroparesis.  I think I am #7.  I have to get a couple more screening tests and then I'll start taking the drug on Feb 3rd.

I guess it's a little crazy to sign up for a trial like this when the side effects include headache, nausea, and vomiting.  But those things happen in the minority of subjects, so I'm keeping my fingers crossed that I won't have any side effects that would cause me to withdraw from the trial.

*We went up to the NW to visit colleges for Teen Wonder and family over MLK weekend. I had made most of the arrangements, but Mr. Wonderful was left holding the bag to find the hotels and possibly take both kids on this trip to Seattle and Portland (and Olympia where Evergreen College is and where Teen Wonder will likely go next fall). So I was released on Wednesday afternoon and Thursday morning we all got on a plane to Seattle. I took a lot of drugs over the weekend...

Tuesday, January 17, 2012

It's a New Year! I resolve to stop being "special"!

Hahaha! right.
It's a funny thing - and I know anyone who suffers a chronic and/or mysterious and inexplicable disorder can relate.

It's not that great being special. Wouldn't it be great to just be average and normal?  Get average scores on your lengthy laboratory reports? Just see a doctor once a year for a "check-up" - or maybe only once every 2-5 years?  I know people like that (like Mr. Wonderful).

On the other hand, as I share more about my health now than I ever have in my life, one interesting result is the realization that once again, "we are all special in our own special way".  Yes, there are a majority of basically problem free bodies running around us, and it is so easy to just assume that this is really how the majority of people live their lives.  Actually I hope that is true - it would make me happier to know that more people feel pretty good most of the time than to imagine most people spend a lot of time suffering some ailment of another. I may feel envious, but never would I wish a health problem on someone.

I guess being special is just that. If you are special, you can make of it what you will.  So many people have shared their own stories with me, and it is comforting to know that you are never really alone unless you choose to be.

Starting this new year, I will say that I have so much love and affectionate feeling in my heart for the friends, colleagues, family members, and even relative strangers who have reached out to say something supportive. I have to send out props especially to my mom who flew down without hesitation to help out Mr. Wonderful, who was drowning under the stress of running a household (during the holidays!) and parenting.  The Casserole Brigade from our Parish came to the rescue several times.  And Mr. Wonderful - what can I say? He's my hero.  He and our kids fill this house with life and love (and chaos and conflict too).  Even with my current personal struggle with my own well-being, I'm still damned lucky!

So here's to 2012 and I'd like to resolve to being just a little less special!