Saturday, September 9, 2017

Hurry, hurry and wait... Communication.. Few updates

What  a week?!?

Re the TIA (Mini Stroke) issue thankfully no one seems to overly worried other than the ER folks. I will say for about the 9-hundreth time I really missed Dr.Bragg this wk (I was able to ask her advice which I appreciated) as she'd have been really up on what had went on and was going on + would make sure the things recommended actually got done in a timely manner.
This said the Humira study 2nd (enrollment) trip is on hold for now till I see the Neurology-Stroke clinic Provider in a couple wks  (25th) and hopefully they will sign off on my going back to normal flying.

Cardiology which was the other "Urgent" thing I needed to get done and get an Echo done they never bothered it seems to pass that info to my Cardiology Team and  Cardiology initially wasn't going to do an Echo at all (I really don't care 1 way or another) but the Neurology clinic literally called no less than 3 times in a several day period asking if I had gotten it done yet and stating they where going to order it to be done at UW if it was not ordered by my Team.
I passed all these messages along to the Cardiology Nurse (who I really like) and she in turn talked to my Cardiologist + he ordered an Echo  + wants a lab test to check dosing levels for the Lovenox (Enoxaperin) injection blood thinner I take. I'll do both of those mid-next wk (I'm sure I could have done these sooner but next wk is what worked for my schedule and seems no rush). They'll let me know the result. I just asked if they could  include a note or something stating if they felt things where fine from the heart aspect so Neurology would be happy. Trying to cross all my T's and dot all I's before the Neurology-stroke Appt!!

In the mean time I seen Neurosurgery at AFCH (It was a UW kind of week I guess) and Dr.Iskandar and I are going ahead with the shunt surgery (LP Shunt). He'll explore my lumbar (low back) and if an acceptable, less scar filled area is available he'll move the catheter down (shunt catheter tunnels up to my thoracic spine now). If this is all to scar filled (my back is a mess and already had several decompressions/laminectomy surgeries for shunts) then  he said he would at least try moving the catheter a down a small bit in my mid-back. I am praying for low back placement!!!! We know this is an area I do well with, with the LP Shunt. Unfortunately he's not willing to move the valve/reservoir (valve controls how  much Spinal fluid or CSF  drains, the reservoir is used for tapping the shunt to check function or infections/how well the shunt is working) but atleast it is something and hopefully should help some!!!
                     Lumbar Peritoneal Shunt placement (same general placement as mine)
This surgery is scheduled for Sept 26th, the Neurology Appt is the 25th and pre-op is this next Tues before I go to my weekly Infusion.  I am sure praying Neurology signs off and if anything gives suggestions how to prevent another TIA or works with my Cardiology Team (this is where I really miss Dr.Bragg and even my Neuro-Endocrine dr. said it the other day, Dr.Bragg would pick up the phone and talk to these Providers).

Otherwise I have a few trips for various reasons in Oct and early Nov., for the Sangamo talk/invite and to AZ (Hydro walk) so saying prayers things are sorted by then and my Team can do what seems rather impossible these days and work together to sort this stuff!
  It's not all that reassuring when 1 dr., has no clue you even where in their hospital ER, their Residents re-programmed your shunts and yet they had no idea till I asked their opinion about the whole issue that the TIA had even occurred!? Kind of the same with Cardiology - I'm glad if he's not concerned but ya know there's not much that worries me and that night I WAS worried! Anyone who knows me even remotely well knows my biggest fear has always been losing ability to drive and losing being independent!

Will update when there's something to update.
Thanks for stopping by,


PS On a side note Sunday School starts tmrw, almost seems hard to belive!  I am praying my body just plays nice and this yr I  make it more than just the 1st wk (2 wks instead, lol?) before being out potentially a week or few wks. Last year I was there the 1st day and then gone for the next 4wks or so due to surgeries but remember being so uncomfortable (was my choice to go anyways, a good friend of mine will always pick up my class if I am sick/out). I think I'm looking fwd to this starting again!

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