Monday, April 8, 2013


Talked to Cardiologists Secretary earlier and then heard back late this afternoon; they wanted an appt on thurs the one day of course that is packed full of other appt (neurosurgery-shunt revision fup) and plans (grr!!!!!) and so while I doubt it makes my PCP happy (she wanted the Echo within a week) the appt is scheduled for 2 wks from this coming thurs. I couldnt do 2 weeks from tmrw (a tues) due to another appt in Madison ive rescheduled 1/2 a dozen times already due to the shunt revisions and other appts and so we settled on that thurs. The breathing issues are a little better than last week so hopefully this symptoms will just stay slightly settled!?? Although id very much like to be able to breathe better (not have to think about it, it just be a normal effort or go back to normal, not be an effort to get enough air at times) I dont really look fwd to the appt after the Echo as im guessing we'll be looking at/thinking about who should do the valve replacement(s) and really thinking about what steps need to be taken care of before this is done (dental work for instance) I see the dentist 1st wk of May, am guessing there are 2 back teeth that may be pulled as they are very cracked from anesthesia and although (knock on wood, say a prayer) not painful seem to be getting worse as far as how far they are cracked. We also really have to decide where we are having the valve replacement(s) done as there isnt any drs out there who have much experience w MPS pts and much less truly complex underying issues and MPS so my Cardiologist was considering someone he trained under at a private heart hospital in Mn when he was training at Mayo in the ACHD program (not my first choice, would really like to stay in WI) and I want to ask about places like UW (cathether based, maybe not an option as would then going off others who've done tissue valve's experience typically require fixing/replacing valve again in another few years) or his own hospitals programs.
Not fun any of this!

Otherwise I see Dr.Bragg for fup thurs, shouldnt be any big deal, not sure if we'll adjust the Codman-VP shunt valve down or not but shunts seem to be working atleast somewhat which makes this 3 weeks now I believe, some kind of a miracle - and I know your thinking "well how is partially working any good?" Well both shunts working partially is better than either shunt not working well or one not working at all and is relieving pressure to a fair degree so I will take what I can get for now!

Also getting the tattoo on my inner (upper) wrist/arm on thurs - a chromosome of where the MPS gene lies so hopefully turns out well. Same place I got my 1st tattoo so not to worried and shouldnt be as sensitive a spot.

Will post pic after and update if anything new from appt w Dr.Bragg.
I leave for Boston Sat.
Thanks for stopping by,


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