Dr. Porphyria Himself: Part Two.

12 11 2009

The Appointment is now a thing of the past. The good news is that while having lunch at the posh eatery, I spotted some sweet, beautiful, holy sweet potato fries on the menu, and Eric and I decided that would be my post-visit reward.

We went back up to the office at 12:50, and were called back at 1:15. For my 1:00 appointment that I showed up at 10:30 for. I guess 15 minutes late isn’t so bad, except I knew once I was “in,” I’d sit on the table and wait for another 30 cold, boring minutes. I had my weight and height checked: Still 5’5″, and up to 118.3 lbs! My BP was 124 over 70, which was excellently high (for me) and normal (for the general population.)

After a 20 minute sit in the exam room, a nurse practitioner entered and asked why I was there. I told her I was hoping she could answer that for me. So I explained the history, and at first she was skeptical. I could tell. When I told her about the red pee in the hospital, she tried to blame it on a bloody bladder infection that was noted in my records. I had to point out that it was in fact suspected at one point that I had UTI, but it was ruled out. Which I knew, because I had spent the entire evening before pouring over the medical records from the hospital with a red pen, making notes beside each bit I disagreed with and thought was incorrect. Like the part about “Patient is a 29 year old white female [I agree with that,] who appears uncomfortable and complains of mild pain.” WHAT!??! Mild pain my ASS! Appears UNCOMFORTABLE! So, if screaming and begging to die is complaining of mild pain, I’d hate to see what it looks like for someone to complain of severe pain.

OH! Another story, related to the medical records:

I read a part that the same idiot mild-pain doctor wrote that said “Endoscopy reccommended, and the patient received endoscopy on 9/29/09.” I don’t recall ANY talk of an endoscopy, and I’m puh-retty sure I’d remember such an event. (Endoscopy is the act of shoving a camera on a tube down one’s throat and into the intestines and stomach to explore for goodies.)

Just to double-check, I went to Eric and said “So, this idiot doctor wrote that I had an endoscopy! Isn’t that crazy? I never had an endoscopy, did I?”

Pause.

“Uh, yeah.”

Oh shit.

“Yeah, the surgeon came in on Sunday and we all talked about it a lot and thought it’d be a good idea, so they wheeled you out on Tuesday and you had it done. I waited in your room for you, and you seemed fully aware of what was going on.”

If I wasn’t before I’m now a true believer in the fact that our brains block out traumatic events to protect us or something, because goodlordyjesus I have NO recollection WHATSOEVER of any conversation about an endoscopy, much less actually having the damn thing done! I realize I was doped up, but I remember plenty of other things from those days, like conversations with the hospitalist about it probably being pancreatitis, and Rose trying to tell me I weighed 50 pounds, and the nurses calling for security when Eric lost his shit after they gave me an aspirin for the worst pain of my life. It just completley dumbfounds me that I have no memory at all of the endoscopy.

Anyway, back to Dr. Mezey: After I finally sounded like I new my shit enough for the nurse practitioner to start actually feeling sympathy for me, she said, “Well, let’s see what the professor has to say,” and stepped out of the room.

Eric almost fell asleep in his chair while we waited, so I mad him get up and move around. He moved to the exam table, dangling his legs, while I sat in one of the chairs and organized my notes. My nose started feeling itchy all the sudden, so I scratched it. And rubbed a bugger right out of my nostril, which planted itself firmly on the outside of my nose.  “You have a bugger,” Eric said. “I know! You wanna get me a tissue instead of just sitting there?”

Of course, at this moment, the handle of the door turned.

“Help me! Help me!” I hissed, glaring at Eric, who sat paralyzed and giggling. The door swung open all the way as I tried to wipe my nose clean… with my right hand, just as the doctor extended HIS right hand to greet me. I was panicked. Eric had now managed to secure a tissue, but it was too late. The little thing had latched onto my right hand, and it wouldn’t budge.

I held up my left hand to shake the doc’s hand, and Eric stood up and turned to face the doctor, passing me the tissue behind his back.

So that’s how it started.

Good thing is, Dr. Mezey is old. I mean ooollldddd. So I have very little confidence that he caught any of that nightmare, and even if he did, he strikes me as the type of old man doctor who wouldn’t find it funny or mortifying, because a bugger is just another part of the glorious and fascinating workings of the human body.

He started off by telling me that he’s no expert in porphyria. Excellent. Glad I made the trip. However, he had seen a couple of porphies before, and he actually had consulted one of the US’s porph experts several times, so he did seem to have a decent grasp on the disease. He helped me find some alternative nausea meds to use in case of another attack, since the ones I’d been given previously were actually unsafe. The nurse practitioner would flip through my giant binder, (the one I’ve put together with all sorts of porph info that I’ll keep with me at all times from now on, in case of an emergency,) looking up drug names that he called out, to check to see if they showed up on the unsafe list. He also found me a non-narcotic pain med to try to wean to, in order to get off morphine. Other than that, he told me things I already knew, told me it looked like I was doing a good job researching things on my own, and told me to avoid triggers.

And that was pretty much that.

Life changing? Not a chance. But I didn’t really think it would be. Now I can say I’ve been to Johns Hopkins, and now I can move on. I’m figuring out (again,) that this is MY health and MY responsibility. Doctors can help me in an attack, but only if I tell them how to help me, and otherwise, it’s up to me to stay healthy and research triggers and keep diaries to see what hurts me.

We made our way back down to the first level, where the posh boutiques were (the kind where old ladies who wear hats shop for stuff to put in giant gold-gilded shopping bags and look burdened,) and we bought Adelaide a posh present from a posh baby boutique, and I ate  posh sweet potato fries. And then put on my hat.

 

 

 

 

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4 responses

12 11 2009
Tappan

Seriously? This is the second time this fall I’ve heard less than glowing reports about Johns Hopkins – they better be careful or they are going to loose some of their posh notoriety and before you know it they’ll only be published on the internet and they’ll have to move to the annex to the Target Shopping center complex! Hope the new meds help … and that your lovely Adelaide liked her present.

13 11 2009
rmatch

Well, at least you’re getting safer drugs and posh treats. Sorry the doc was disappointing, but in my experience, they usually are. You look really cute, by the way.

24 11 2009
Kelly Gish

Sabrina,
I saw this address on your facebook status and checked it out. Wow, you are really going through some bad stuff, know that you are in our prayers and we are thinking about you. I hope everything gets better for you real soon! Kelly

27 11 2009
myswelldisease

Thanks Kelly. I’ll take some more prayers!
And to make it very clear to all my readers, especially my fellow Unitarians, I’m currently accepting all forms of prayer, to whatever god/goddess/entity it may be, and well-wishes, good thoughts, good vibes, positive energy, voodoo, and non-animal sacrifices. I’m not picky 🙂
Good to hear from you, Kelly, and your family is the cutest! Congrats on the newbie that’s showing up soon!

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