Monday, July 26, 2010

While You're Down There... Can We Talk?

Today I had an appointment for my yearly OB/GYN check up. I was slightly nervous telling my doctor about this whole Porphyria thing. All of the doctors I have seen look at me like I have multiple heads, write vigorous notes, and start flipping through medical dictionaries/reference materials/medical journals...the like. Beyond my concerns that my OB/GYN, lets call her Dr. Gyno, not having much knowledge about this admittedly rare disease, I was more worried she would say that she thought I would need a different doctor that works with more high risk patients and that she didn't think pregnancy would be a good idea for me... which I have heard from other Porphs.

However, my appointment took a turn I didn't expect. Rather than Dr. Gyno being shocked about my new medical information, she barely blinked! At first I wanted to ask if she had heard me. But then she said, "oh, ok. Well I've had 3 Porphyria patients before." It's an OB/GYN miracle I tell you! So rather than shocking her, I was the one left speechless.

Beyond that (I know there's more) Dr. Gyno proceeds to tell me that while she was a resident, her mentor was one of the leading experts in the USA for Porphyria. Unfortunately he has since passed away, but that she learned a lot from him. AMAZING!

She and I had a great talk about the best options for birth control (since many contain hormones that are triggers for Porphs), planning future pregnancies and that it might be best to have a team in place before my husband and I get preggers, and she is even going to help Dr. Premier in finding local doctors that have knowledge/experience in treating Porphs.

I cannot believe my luck and am feeling so relieved that not only is Dr. Gyno NOT scared off by my Porphyria, but she has knowledge, experience, and other contacts to help me.

1 comment:

  1. That is awesome! We're still having some trouble with the doctors around here. We often wonder why we're paying to see them when we end up teaching them stuff.