Thursday, February 1, 2018

NIH-Rare Disease mtng (3/1), Various updates.

I started this update last wk and then never finished so I will try to do so tonight. Sometimes I want to write but feel a little blah when it comes to putting in to words what's on my mind!

             NIH Mtng at Nat'l Center Translational Medicine
I have been working on my speech quite a bit the past few weeks (for the Rare Disease Day mtng 3/1 which is this coming Thurs!) and specifically for my Gene editing panel.
This is a direct link to the live webcast that will be done Thurs 3/1. I know a few have asked. My panel is slated to start at 9:25am.
I fly in to D.C Weds afternoon, the 4 of us on the panel (myself, Dr.Whitley, Sandy Macrae, Sangamo CEO and Scott M.) have a dinner mtng Weds night at a restaurant in our hotel for Thurs's mtng and then we start bright and early Thurs.
I am actually not clear yet if there is anything i'll need to do after my panel or if I/we will all stay at the NIH-NCATs center or what exarly happens. I fly home Fri then.


Infusion symptoms - changes made
I've been having fevers during infusion for last few months but these have started  occurring outside of infusions at times now. I had talked to my Primary dr to give her a heads up awhile back (I really wasn't to concerned but my Infusion Nurse would mention it every wk and ask if I felt ok). My Primary dr then raised concern for possible Port (access device) or shunt infection. Blood cultures came back negative for the Port and we think they likely will for the shunts to but I am praying so! <--   Thankfully I started this post some wks ago and never heard anything of the cultures so they must have been clear. Not a surprise but still good!

 We all as I think I may have previously wrote about feel it's probably pretty unlikely but at the same time the fevers are coming from some where and continuing for months + started before I started the Humira injections (which can lower ones immune system).

Thankfully after the shunt taps some wks ago and after removing some fluid I felt good for awhile which was (as it ALWAYS IS) - AMAZING! The immediate hours after the shunt taps are always so glorious which really is sad as who seriously wants a needle stuck in your back or head even if it's being tapped in to a access device on the shunts in either space? - I literally had gotten a ton of errands done before then having to drive back to BD and go to Physical Therapy back when these taps where done. After PT (again a few wks ago) - I had ran a couple more small errands and went to my Parents for supper. Was SOOO NICE!!!! I SOOOO freaking wish my Neurosurgeon could understand that difference!
 It's not just subtle either but a HUGE difference when that extra CSF is off! My Physical Therapist said to me (as he does when he can tell I felt good) "I can always tell by your eyes, they are brighter when you don't have a headache!"  which is also a comment Dr.Bragg used to make.
 Aghhh I want to feel that good ALLL the time!!!! How do I convince my Neurosurgeon of this and to look past the fact I do feeling bad really damn well (unfriken fortunately I think sometimes! I don't know how to show him as I can't whine and complain and carry on?!?!?

 I also had saw Audiology a few wks ago to fix my 1 hearing aid. Part of the end just needed to be put back together.
  INR for Cardiology has been nothing short of rather annoying lately running at super high #'s (increased, very high risks for bleeding). --- That atleast was finally in-a safe range now again after a crazy few wks (INRs where running 8.08, 6.96, etc and my normal range is 2.5-3.5).

Will update soon, a lot going on but this is already long enough! =)
Thanks for stopping by,


My speech for next wk (I will lead off our panel and have just 5mins)
                               Gene editing speech/Patient Rep for NIH talk