I have an HMO...so I have to jump through hoops. I had to ask my primary care doctor to get a referral to an opthamologist and then ask that doctor to refer me to Jules Stein. It's not as easy as it seems. The opthamologist, a local doctor, who I'm sure is a very capable doctor, saw me and made his recommendations which is not what my doctors usually say or do. He said he'd just watch them. My hair stood up on end.
I guess I could just watch them...but my experience is...you watch them GROW and then it's possible that when you do start treating them, you don't get it all or they leak or hemorrhage or cause another set of problems. I asked for the referral and he says, I never send anyone over to Jules Stein. What???
Yesterday we visited Jules Stein Eye Institute. I feel safe there, I feel like I'm in good hands. They know VHL, they know me.
I get there early and they take me in right away...unusual, it usually takes forever, they are really busy. I told them that when I visited ER last year, they saw three new tumors in my right eye...and since I didn't have health insurance, I would have to wait...these little hemangioblastomas usually grow slow. I could tell right away, that the doctor saw them. I was dialated and then send up to take photos, and then another set with contrast.
I then went back to see Dr. McConnell. She treats all of my family since Dr. Straatsma retired. Dr. Straatsma diagnosed my mom in 1962. She told me that there are 6 new tumors and she wants to laser them immediately...while they are small. They also noted the beginnings of cataracts. (no worries, they grow slow and are age related). She sends me up for more photos of the fundus? Four hours later...I'm done.
Surgery is scheduled for Jan 24th. Their first opening was Thursday...but I have a race coming up and want to do that first. ha.
While I get a little anxious having treatments and surgeries, this will be my 7th time. I know what to expect...it IS a process but it's over pretty quickly.
My family has gone through HELL with VHL...I'm grateful that I'm still here and that I have my vision. For as long as I can remember, I've been afraid of the dark, one of my biggest fears is losing my sight.
I watched my mother lose her sight at 25 yrs old, she raised three small children...and I can't imaging what she experienced personally. For me, she was strong and fearless...she never complained...she kept moving forward.
My mother was a WARRIOR!
|My mom <3|
|Uncle Bill and my Mom, both VHL Warriors.|