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!

Monday, September 4, 2017

Brains are a fickle thing.. Brain, Heart.. transient attack?

I got back from CA (Humira study stuff) Fri night, unpacked, settled and back in my norm pretty quickly. I was by my Parents Sat for supper and a few hours after that, after I'd been home a little while I had a sudden onset of some really unusual symptoms which at first I didn't think to much of.
The initial symptoms quickly turned in to numbness  that quickly spread to 1 entire side of my body, thinking was really weird, trying to type a message to my Dad and then to call him (then trying to type in his # on my phone to actually call) took I bet 10mins for something that's 2nd nature. It was WEIRD!!!

Once I finally got my Dad on the phone I just asked if he'd come take me to the ER (which anyone who knows me even slightly well knows I HATE ERs). We went to the ER in BD after I'd called the on-call Adult Congenital Cardiologist who advised getting to an ER and getting brain imaging done + keep them updated.
 In the interim I had posted something on fb as well about the symptoms and a few of my drs., saw the message + where private messaging me to see what was going on and to make sure I was in fact going to the ER and that the ER was going to do imaging.

While waiting for my Dad I managed to 1/2 walk, 1/2  drag myself from my living room to my bedroom (my Apt is not huge but this was quite the process)  to take an early dose of the baby aspirin I take every morning and my Lovenox (blood thinner) dose early + pack a few things just in case.

Once we had gotten to the local ER they did a CT Scan, labs and then we sat there for what felt like eons  (6hrs I believe, the Ambulance guys where a but taken aback by this long delay actually in the transfer though maybe there was a reason I don't really know) till the ER made the decision to transfer  and then eventually decided to transfer to UW.
      UW ER did more lab work, an Brain and other MRI with and without contrast and few other basic tests but the basic thinking is I probably had a transient ischemic attack  (basically a stroke that passes I guess) and since I am already on blood thinners (Lovenox) and Baby Aspirin they would let me go home. The Neurology folks at UW gave me the name of a Neurology Provider I need to see this wk at UWwho fups on all ER stroke Pts and I am  to also have my Cardiology Team do an Echo + go from there.
   Fun, fun, FUN!?!? (Not so much though glad the symptoms and issue passed, even I was a bit worried!!!!)
I left a message for my Cardiology Team (it's Labor day today) and will call the Neurology office tomorrow. I do see my Peds Neurosurgery Provider later this wk so a lot to follow up on but thankfully most things where just transient and did not last!!!!
If I had to guess given Dr.Earing (Cardiology) mentioned concerns he had about my just being on the Lovenox and not Coumadin and he had if I remember right felt there was a higher risk for blood clots I'd guess he'd opt to add back the (Coumadin)  but also keep the Lovenox injections for some time (or atleast till we got the shunt stuff hopefully sorted).

Neurosurgery Resident - the shunts are a pain in the arsh to re-program and adter a bit of re-trying he not only listened (a good thing!!) he got them!     
Stay tuned I guess?
Prayers are always appreciated! I fully believe it is because of God this episode and other things I have experienced or been through have not been worse. - I am grateful to know my God's forgiveness and love!