Thursday, December 1, 2011


This week has been busy and yet times ive had a little more time to get things done or work on projects (genzyme) and spend time with my nephew and today he and my niece and sister this morning.

To highlight exactly how frustrating my care can be at times (im not sure if it's anyone's fault or if I am just to charitable) but monday I receied a messaged via the hosptial  electronic system from my NP that there was she suspected a bacterial infection brewing in my urine and so she was calling in a antibiotic to be taken on top of the zyvox (linaxolid) ive been taking for the past 2 1/2 weeks for the CNS/shunt infection. Tuesday morning my Nsg's NP called to make sure a antibiotic was started as they had gotten the pre-op form/info and also to ask me to let her know if the antibiotic wasnt prescribed up till surgery. I picked up the cipro tues afternoon and it was written for 3 days 2x's a day so I called back the nurse (Lisa) and let her know as I didnt have the NPs # directly on my cell. She talked to the NP and they asked if I could find out if my PCP-NP would re-prescribe the Cipro up till the following tues (6th) so I sent  a message back to my PCP-NP and she responded saying she had left  a message for neurosurgery NP and it was ok the way it was. Today I talked to Lisa again (I swea I talk to her more in the past 4 months than I have my own family) and she wanted it up till surgery - in any case she e-prescribed it for another 5 days 2x's a day. Wouldnt it be easier if providers just talked to each other??? Dont get me wrong I do really like both of these offices but good golly!! 'the gift of patience' is not always gift enough! ;0)

Symptoms such as the low back pain and vision continue without improvement which is really weird so i'll have to talk to Dr.Bragg about this before or after surgery but I do wonder if  maybe the low back pain might by some small chance improve once we take out the LP shunt (due to the shunt infections) 0 I guess we'll see..

Otherwise we are continuing to move along albeit slowly on the genzyme - adult project and this week I spent several hours identifying and contacting adults ranging from late 20's to late 40's and have heard back from one lady already who would like to participate. Myself and the mrketing + patient advocacy reps at genzyme are aiming for Jan to do our first part of this project w/about 5-6-7 other adults ive indetified and using pre-determined questions/information we've come up with. It has been interesting and I think will be useful not just to MPS I but across the spectrum of MPS's to other adults.

I'll update next week likely but in the mean time take care and be well,


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