Things we all can agree on...

#1 - being healthy is great

#2 - doing your taxes is kind of a drag

#3 - a sunny afternoon after a morning of fog and clouds feels like a gift

(feel free to add to this list - just a couple of things that popped in my head today)

Update: I'm 6 days into my guinea pig gig - so far no side effects from the drug that I can identify. Yesterday I felt a bit yucky, but I still have days like that at this point. I tell you what though - I have to hurry and gulp down the 7 (yes SEVEN) tablets because they taste terrible! I think they are pretty acidic.  I looked up the side effects for this drug before I started (Kuvan).  So funny (not really, but kinda) - some significant percentage of people in the PKU clinical trial had nausea as a side effect. 

oh, and vomiting too. nice.  

So that is why I'm so relieved to feel pretty okay so far.  After 4 weeks I switch to a higher dose though - 14 tablets at a time  (that's right - FOUR plus TEN = how many pills I have to gulp down). Keep yer fingers crossed that I don't start barfing at that point.  If it seems odd to anyone that I'm testing a drug that should help my stomach function better but that might make me sick. Well, join the party! 

Speaking of things that make me barf. I realized yesterday that one reason it's hard to identify a specific trigger for the extended episodes of vomiting because so many things will make me nauseous and often result in me throwing up. Usually just a one-off thing - or at least short-lived.  Jet-lag (check), migraine (check), too much stress (check), riding in the back of a cab with a terrible driver (check and double check).  I'm serious - I have had to ask a driver to pull over and let me barf in at least 3 different countries!

Update #2: RE: my healthcare"team" composition...

I decided not to divorce my endocrinologist and dump him for someone new. I've been seeing him for over 20 years now and I went in to see him recently thinking at least I should talk to him in person before going to another doc. Then I changed my mind. I don't want to train another doctor right now. I'm already seeing too many new doctors who don't know me. 

I made an appointment with a hand surgeon for my Dupuytren's yesterday (or maybe monday)...he's located a bit farther away than some of the other options so now I drive all the way down to Stanford for my GI doc (45 minutes in no traffic), out to Orinda to see my endocrinologist, and up to Marin to see this hand surgeon. So much for centralizing and simplifying my medical/health team!

If you're wondering about Dupuytren's, don't worry - I'll write a post about just that next time, what I'm hoping the doctor can do for it, and include a picture of my hand. But for now it's time to sign off. I've been sleeping more, and I think that is a good thing. 

#4 - sleep is good.

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...