Wednesday, June 11, 2014


This week has been fairly quiet minus watching my nephew several days and many phone calls/emails. I am also registered now for the Disney Conf. in Dec through the Foundation I work for. =) Cardiology we re-checked INR which was 2.24 on Monday and is finally in-range, the first time since I believe a week out from the last shunt surgery end of March!
I talked to Jane, Dr.E's Nurse Monday afternoon when she called w the results and will re-check INR again in 2 wks at ERT just to make sure the level isn't to high (INR # doubled in the 1.5wks since Cardiology Appt), so they want to make sure I do not suddenly get to thinned.
As far as breathing Jane called me back today and Dr.E isn't sure what to make of the symptoms (makes 2 of us!?) so they'd like to keep meds the same (which is good as I honestly don't think I can tolerate any increases in any of the cardiac meds). They'd like to give it a few more days and Jane will call me "1st thing Monday" to see how symptoms are/if any change. The breathing issues are very intermittent, it's just when the symptoms do occur is almost stifling and seems as if there's no rhyme or reason to when it comes on.
If no real change (=/) then she said Dr.E would likely want me to come in and see them (also =/) I guess re-eval or something. Sooo frustrating given it's been 2 weeks, TWO WEEKS since I was just there!
I am praying the symptoms will just improve as it is a little hard especially b/c I know the vast majority of people would never even know when these symptoms are occurring (a few have commented). I will just hope and pray symptoms improve again and was just a fluke!? ..

Neurosurgery, some headaches the past couple days (after a fairly good few wks since the last adjustment) although symptoms not to horrible by afternoon (or having been up awhile). I can deal with them for now and like the breathing I just hope these shunts adjust themselves to drain better.
I do think it is just a partial obstruction in one of the shunts and sometimes these can fix themselves or I wondered if we maybe tried re-setting 1 of the shunts to higher (draining less) temporarily and then lower again (drain more) could this flush any small blockage out.. Not really sure about that. ironically I had literally just said to Dr.Bragg in an email and to others that the H/A's where doing really well for once! Hope it improves again on it's own!
Due to some shooting leg pain/muscle type discomfort Dr.Bragg is ordering a series of spine MRI's. This is not un-common as MRIs are recommended in MPS I pts anyways due to our propensity to have spine compression and other issues. She (Bragg) wondered if it could be a herniated disc in one of the areas I've previously had spine surgery but is also possible maybe it's also a temporary thing? (symptoms have been occurring for over a month.
Her Nurse will call to schedule those and then appt afterwards, likely w one of the NP's to reset both shunts.

I have been watching Zan several days last week, this week and next week. VBS also starts next week Monday afternoon. For VBS since I am teaching I was able to get my infusion switched from Monday next wk at CHW to Tues with my former ERT Nurse agreeing to come in and do it for me.
We had been planning to figure out a day to have lunch so will do this instead. =) I should only miss 1 of the 4 days of VBS this way and atleast this year it won't be the 1st day!

On a different note my Genzyme Case Man. emailed today to get the contact info for my Insur. Nurse Case Man. so she (Amy, Genzyme CM) could check on the progress of the Aldurazyme out-of-network Prior Auth and make sure this will be approved in time for July 1st when our insur. contract year starts over.
She mentioned in her email that she, the Patient Care Liaison (Karen) and Carol, the drug rep would be in WI for about a week in July and want to have lunch/dinner (something Karen and I had talked about last I saw her). I've not actually met Amy or Carol in person (both are fairly new) so will be great to see Karen and meet the other 2! =)
Otherwise that's about it, I'll update whenever there's anything new to share.
Thanks for stopping by,

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