Monday, January 6, 2014

INR's, Next weeks Shunt Surgeries; related Info

Nancy, the Cardiology NP called with the INR results today (last Thurs) and as was to pretty much be expected (given I had been off of Coumadin for a week prior to the surgery 12/27) my INR was not in-range and fairly low. She and Dr.Earing re-upped the dose to 6mgs and I re-test on Monday 1/6.
1/6 Today's INR result was still low at 1.68 (goal range 2.0-3.0) though the low INR level wasn't that surprising again given the time off of Coumadin.
Dr.Earing told Jane whom I was talking to to keep the dose at 6mgs considering I take the last dose of this on Thurs and then stop until 24hrs after next Tues's double shunt surgery. I am to then let the Cardiology Team know once I am released from Dr.Bragg/being in-patient and we'll re-start INR draws again. The goal INR range for surgery is below 1.2 so our hope is by stopping Coumadin 72 hrs prior to surgery this level will fall to the 'magic' (low enough) range where we don't need to give Plasma replacement again (we had to do the 2 bags last time right before surgery to bring it down enough).

I talked to Dr.Bragg's Secretary and NP several times today regarding next weeks surgery and pre-admit, the CT scan, INR, etc. There was initially some confusion which day I was to be admitted (Monday ahead of Tues's surgery or Tues the day of surgery) but this was easily enough sorted out and just a few phone calls between them and myself and their having to get ahold of Dr.Bragg who is on vacation till I believe Monday.
Dr.Bragg had mentioned to me while I was still admitted a couple wks ago that she would want a pre-admit the day before for the INR management and in order to get a Stealth CT scan (used for a guidance system in VP shunt/brain surgery) but I guess hadn't left this in her notes. All was confirmed and worked out though and i'll be admitted at 1:00 on Monday. I'll go to admission, from which i'll go up to my assigned room on D6-4 and then all in-putted orders will be processed (CT Scan, Port access/INR draw) and the Aldurazyme is in the process of being worked out between the floor Pharmacists and Dr.Bragg's team. They are fantastic help!

The weather here has been CRAZY cold! My Dad had to come this morning to help me get my car started which he was easily able to do (first try, lol) but it turns out he just went with me anyways and went shopping most of the time I was infusing and then came and spent the last of the 4.5 hrs hanging out/talking while my Nurse and I played Yahtzee. I was able to cancel what I have for Tues and although I have things Weds/Thurs these days are supposed to start to warm up. I get stir crazy being home all day but I guess I can take one day of hanging around my Apt in my PJ's catching up on stuff. :)
Otherwise I just need to do labs later this week and a Pain Mngmt fup on Thurs (Milw.) I think next Monday Joan, (came with me when I was sent by Dr.Bragg to the ER at UW for the exposed shunt) is coming with me to Madison; our tentative plan is to get lunch before I am admitted. I enjoy spending time with Joan so am happy she'll be coming with. :)

Yesterday I had Church book club after our Sunday School 'Group' Class and after Church. The book club finished the book they had been reading and are starting a new one (by Max Lucado). This Thurs after going to Milw. one of our Pastor's asked myself and the 2 others I co-run our Young Adult committee with if we could/would come over to his house for supper (after he is done with Church) and to go over our Young Adult Committee plans. I don't think i'll be back in time for Church but plan to meet everyone at his house and then just go to Church per normal on Sun after Sunday School. One of the others on the Committee is coming from work (Connie and I teach Sun School and typically sit together on Sunday's in Church) so she also is coming after the Church service and meeting at Pastor's house.
Friday I am mtng with 2 of the Young Adults that where at our meeting last Sunday (for the committee) and who've offered to help set up a fb page for our St.John's Young Adult outreach efforts. Both of these things should be good and interesting.

I don't think I wrote about it in my last post but in Febr there is a big meeting related to all of the Lysosomal disorders (the disease category my diagnosis, MPS I falls under) being held in San Diego and I am attending on behalf of Gene Spotlight, the Foundation I work for. I'll both be there to attend meetings/sessions and to work at the GSF booth regarding GSF's outreach/funding of research efforts. I am really excited as it has been 4 or 5 years since I've been to a WORLD meeting! That was last held (when I was last there) in Las Vegas! I am very grateful for these experiences and to get to see Allison and Chip again who have become good friends. :)
The week after that I am tentatively scheduled to fly to Mn to catch up on the longitudinal cognitive study for MPS I (neuropsych testing and fMRI (for which they have a Neurosurgeon (who knows my Neurosurgeons AND highly recommends my Team!) who will reset both my shunts post-the MRI. I believe I may also be doing a Endocrine related study then.

I am sure there are somethings I am forgetting but I can't think of much else in which case I will sign off and update when or if I have anything else to add. Otherwise I will update again either after being admitted Monday or sometime after surgery on Tues.
Thanks for stopping by,

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