Tuesday, May 17, 2011

Pre-op Arrangements

What a crazy, busy day!  Lots of phone calls between the Nsg's nurse regarding fax #'s, surgery arrangements and other of my  endocrine drs and Nsg nurses requests regarding pre and post surgery care. My Endocrine dr sent an email this morning in response to the group email I sent to my core group of specialists (PCP, Pain Mngmt, Neurology, Endocrine, Cardiology, GC and Insur CM)  which is something I normally do for bigger, more pertinent health issues. Anyways my Endo dr wrote in her email to remind me to have my Nsg order the  stress dose of  solu-cortef for pre and post-op given by IV and then at an additional doses back on the regular hydrocortisone by mouth I take daily. So I arranged this with the Nsg office and they have the order + all worked out for that. I also had to get anesthesia records from FMLH and took care of that given the concerns with difficult airway/difficult intubation. I also had the pre-op physical with my PCP's NP (who is as familiar with my care and also very involved with my specialists) who ok'd the surgery other than a little concern with the long term use of hydrocortisone which we really have no choice on as that replaces the deficient cortisol production caused by pituitary insufficency. Her other bigger concern was that my Cardiologist release/ok me for the surgery which as I mentioned in yesterdays post I see him anyways next week for normal fup (Echo and appt) and she also was going to call him just to make sure to. I like that these drs are so thorough and yet not overwhelming. (by that I mean they would rather let me make decisions regarding my care and keep them updated and are not afraid to listen to what I tell them and accept that im not making something up + work well with my other specialists in trying to keep everyone on the same page). There where a few little minor things she pointed out that I hadnt heard before but nothing really concerning or that she seemed to concerned about.

The irony of this surgery is that since it will be at UW I will be on the receiving end of a project I am working on there for the 'peri-operative pain mngmt' committee -will give a interesting perspective no doubt as while I am the patient representative to this committe ive never actually been a patient in any of UW's pain care programs as up to this point I didnt see any drs at UW and my own Pain Mngmt dr is in Milw (UW is in Madison) near all of my other specialists. The Pain care coord. I work with at UW on this committee and other outreach awareness for APFAN (including a meeting we are going to begin planning in June for Peds Pain awareness w/both providers and families) has already asked if she could stop by post-op which is very nice of her.

I was reading through prior anesthesia and shunt surgery reports looking for the ones pertinent to keep for my records and which where neccessary for Nsg nurse for this surgery and something struck me (as often things do in these reports).  There was a comment about my lack of response related to some bad news I cant remember what it was but it made me think about other appts and the change in how I used to respond to providers telling me something unnerving or bad vs now. The first few years I was diagnosed I would have shed a few tears most often and openly showed my emotions - not because I wanted to but bc I was so upset. Somewhere along the way I got to where I almost shut down emotionally - while I still respond to whatever it is bein said I almost shut down emotional responses and clam up. I wonder why that is? I mean I realize when I am doing it but I dont always care bc I just dont want to reveal to alot of people what they are saying is bothering me. I wonder how many people are like this?

As far as the above meeting I mentioned I am meeting with this Pain Coord, her colleague a Peds Pain coord and my regional manager for APF in June (the week after my surgery so I pray I am back in shape bc I am looking fwd to this new project!

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