October 9, 2011

Lesson: You are your own (and your kids own) best advocate.

One lesson I learned the hard way in life is that you are your own best advocate when it comes to your health. It's one of those lessons that I try to impart on anyone I know who is having health issues: if you have a gut feeling something is wrong, beyond what the doctors say is going on, listen to your gut. Push for more tests, get a second opinion, research your symptoms on your own. Do not silence your intuition just because a doctor gives you their diagnosis. Doctors are not Gods; they are human. And they can be wrong.

My only interaction with doctors as a kid was with my pediatrician, for standard things. Well checks, strep tests, vaccinations, diagnosing the chicken pox. I had perfect vision and perfect hearing. I never broke a bone, needed stitches, or had any odd illnesses that required me to see a specialist. Overall, I was pretty healthy and pretty lucky. But because of my only ever interfacing with my pediatrician (for 18 years,) I also think that I developed an unrealistic view of doctors. In my mind, doctors (at least the vast majority of them) knew everything. They rarely, if ever, faltered. My first wake-up call was in the spring of 2005 when I developed a blood clot and spent a week in the hospital, half of my days in ICU. I only saw my doctor 2 or 3 times total in a span of 6 days, had to teach three different nurses how to draw blood out of my arterial line, and while I finally left the hospital with a diagnosis, I also left without the surgery I needed because I was so horrified at how alone I realized I was in defending my own health. I won't go into details because the story is LONG, but the short of it is that after a bunch of research done by me, my family, and a family friend, I decided to have the surgery done in a different state by a doctor who not only knew what the heck he was doing (and later told me that he would have been able to give me a diagnosis in a day or two tops) but also had bedside manner, which my first doctor definitely didn't.

My second experience with this has been in the past couple of weeks. Again, it is a ridiculously long story, but the short version is that Audia was having light sensitivity and watering in her left eye. First we were told it was "non-contagious conjunctivitis" and prescribed drops. A couple days later, we noticed a whitish spot on her cornea and brought her back in on day 4 of the drops because she had not improved at all and the spot was still there. We were referred to a pediatric ophthalmologist. He couldn't see any spot and said it was probably just pink eye and to give the drops another week (it had been 6 days on the drops already.) The next day her eye was worse and my gut told me that it just was NOT pink eye. We insisted on another appointment, and this time the eye doctor actually used a slit lamp and magnification (which he did not the first time....) and saw what we were talking about. He brought in a corneal specialist to look as well and they both agreed that she needed to have surgery to have the abnormality removed ASAP so it wouldn't cause permanent scarring of her cornea. The day after that, our brave little girl went under anesthesia for the first time in her life to have an "abnormality in the epithelial layer of her cornea" scraped off. Apparently they typically see that kind of abnormality when there is a foreign body embedded in the cornea (like a piece of sand or glass) but they did not find any foreign body, and the "sample" of tissue was too small to send off for testing. The good news is that so far it seems to be healing well and her light sensitivity has diminished immensely compared to a week ago. Only time will tell if this is something that will recur or has impacted her vision.
Lesson reiterated: trust your gut!!