A quick note - surgery is scheduled for tuesday morning arrival at 5:30 (which means leaving my apt 4:00 am and my parents at 4:30 (AAGGHHH!!!!) and surgery is scheduled for 7:30. As of this morning the pre-op nurse didnt have orders written for the solu-cortef pre and post cortisol replacement infusion (cortisol is a stress hormone and for those such as myself who are deficient in this any procedure or surgery can be life threatening and risky if cortisol replacement isnt given ahead of time - in this case my neuro-endocrine dr wrote the orders she faxed for IV Q8hr (every 8 hours the 1st day and the 2nd day will go back to oral meds at high dose tailoring down for 5 days).. So anyways apparently my Nsg has to re-write the orders my endocrine dr sent and so the pre-op nurse was going to make sure this got written before tues. She also said anesthesia would come in the morning of surgery and meet (as will my Nsg of course to go over last minute questions). Nsg's secretary called late this afternoon they hadnt gotten the cardiology notes/release yet and needed my cardiologisrs info - (see this is why I like control - it is hard when you have to rely on various drs offices to send their various info - vs just getting it done yourself! Needless I have worried more than a little this week which is a little unusual for me and last night laid awake after waking up tossing and turning trying to not think about this. I really could use lessons in giving up control better! :)
On a different note I can tell I am getting sick - I am already taking antibiotics for an ear infection caused I think secondary to wisdom tooth issues (being removed the end of the month) so I pray these antibiotics which I had just started kick this all in the bud - say a prayer if you will!
Earlier this week I spoke w/the new Director of US Marketing for Aldurazyme and he seems very motivated as well to try and get things done for MPS I. My big fovus with him was the need to focus on adults with MPS be it getting proper diagnosis, getting doctors to teach adult specialists about these disorders and getting these adult specialists to really understand the differences in our disorder and your average joe with cardiac or neurologic or even spine issues, carpal tunnel, etc. And also another thing we talked about was just getting materials tailored to adults and at meetings getting talks focused to adults or having adult speakers. We are each working on this on our end and conferencing again in a couple weeks.
Will update more later,
Erica
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