Wednesday, July 27, 2011

And the results are in...

So I met with my team of doctors today to go over all the results from last week and discuss options. I used to attend summit meetings/grand rounds like these for my patients, so it's always interesting to be on the other side now. Humble much?

To make things fun and to get an idea of my standing (and because I'm an overachieving teacher's pet) I made them give me grades on a letter scale.

Here are my scores...

-Candida level is less than 25% and should hopefully be eliminated in the next 6 months!
-Aspergillosis is 65%, down from 80% in December. Hey, I'll take it :)
-My average plasma glucose concentration over prolonged periods of time is staying stable
-The immunoglobulin levels have decreased (auto-immune response is lessening)
RAST scores:
-Dates got a 1 on the RAST (low level reaction) --> can eat on occasion!
-Agave got a 2 " (moderate) --> still can't eat, but it used to be a 3.5, so maybe soon...
-Butter got a 0 " (no reaction) --> I can eat small amounts!
-I didn't pay attention to the others bc they were all firm NOs...

Way to go blood!

***Side Note: I have been wanting to eat butter and dates for months, so I could eat some of the health nut desserts I've seen around and bake some sugar-free, gluten-free recipes, so I am SUPER excited about this!***

-Colonoscopy/ultrasound looked really good with only a few spots of old growth remaining
-No new growth detected
-GI tract is healing
-Gut Flora is replenishing

Great job GI!

-Xray/Fluoroscope looked great
-MRI showed no new growth; old growth shrinking
-No more growth or swelling in brain!
-Electrical responses properly being sent from brain
-No more growth in eye orbits (I would like to express a YAY! for not bleeding from my eyeballs anymore!)
-Cerberospinal fluid (brain juice) clear of infection

Way to rock it, Neuro!

*Big fat F
-My "compound muscle action potential" is very low. I don't really know what that means, but it's not good...
-Messages sent from brain are getting lost or altered before getting to foot
-Primary muscles are losing function from lack of mobility
-Secondary muscles are taking up slack and altering gait and skeletal structure (overcompensating)
-Site of nerve damage unknown

I'm really disappointed in you, PT :(

-Bone density is great (Years of drinking milk by the gallon pays off!)
-Toe joint protrusion/hammer toe is getting worse with nerve problems
-Surgery to restructure toes is inevitable

You may have failed, but the important thing is that you tried

-The ole Ticker is doing awesomely!
-Doing a fine job of pumping
-No signs of fungus at all
-Staying in normal ranges and not overworking itself

Cardio, you're a rockstar!

-Lungs still pretty necrosed, but healing
-No purulent sputum present!
-No fluid!
-Fungal balls are not recolonizing; a few sections were able to be removed :)
-No bleeding
-Nasal passages still inflamed but not infected; muscosa has thinned
-spirometry volume and velocity is improving, with my peak expiratory flow is at 300, up from 200 in December (average for my age/height is 430)

Lungs, you win for most improved!

RENAL *Grade incomplete (waiting for results)
-Looked good on MRI, scans and xrays
-No signs of fungal growth
-Pee tests show healthy filtering
...waiting on blood results

Overall, I scored a C+! Barely passing, but passing nonetheless."It doesn't matter if you win by an inch or a mile; winning's winning."

Things are looking pretty good aside from my stupid foot.

As far as my jaw pain goes: I wasn't supposed to have any prescription pain meds after 5pm yesterday, or any ibuprofen or aspirin after midnight last night, before the bloodwork today, which made last night one hell of a party. This morning I felt like a trainwreck, but by the time I was done at the doctor and could have taken something, the pain had dulled to an ache. Thank you!

Today was a really good day and to top it off I get to go to Vegas in a couple weeks, by means of some divinely calculated events. My Dad texted me this morning saying he'd be in Vegas for 5 days on business. I was able to go last summer (read about it here, here, and here) and it was really good medicine. The catch is that he's there during the week and, unlike last time, I have a job. Then, my boss informed me at dinner that she's taking that week off work to spend time with the girls! (Which is better for them, since they've been rotting their brains lying in bed watching movies with me all week) *Cue phone call to Dad* Thus, just a mere 8 hours after my Dad suggested I come stay with him, I was booked for 5 days in Sin City. It's gonna be so hot. I can hardly wait :)

*I meet with the infectious disease doctor tomorrow to talk about the results and make a decision about course of treatment, medicine, possible clinical trials, etc.



  1. I don't know how to make that butter smaller; and given the magnitude of this awesome new development, I feel it appropriate to have a gargantuan stick prominently displayed.

  2. You keep that big stick of butter up there! That is a very exciting development. I just found your blog from your post on facebook and I can't wait to dig deeper and find out more about this crazy journey you've been on!

  3. Congrats!!

    Interesting post full of cool data!

    I was just learning abt aspergilliosis in school, glad to hear no new fungal balls or purulent sputum :)

    Cafe Gratitude has great recipes for date-based desserts. I think they have a "cook"-book...

  4. Oh Jess, that butter is def staying! Thanks for reading. I look @ your recipes when I'm feeling sorry for myself. Hopefully one day I can try one of them.

    Jenn, that's rad they're teaching about it- there needs to be more awareness. Cafe Grat's cookbook was the motivating force to have dates :-)