Thursday, October 12, 2017

Trying To Catch-up

So sorry for the long gap between posts!  I am fine, no worries there, it's just that every attempt that I made at composing, put me to sleep :-(, I sure hope it's not the same for my readers :-)

The chronic fatigue that I've both experienced and about which posted here, in the past, seems to have  come back on worse than before.

Trouble Following  This blog?

I've heard from a family member that they tried to sign-up for email follow-ups here but didn't received any notices of my posts; so I'm hoping to have solved that problem by manually adding his email address to my list of followers.  He also mentioned being unable to leave comments, although, I don't know for sure why that was, I suspect it may be that non-gmail accounts don't work, so I've allowed the feature to allow anonymous commenters.  Hopefully that will fix that issue too. 

9/12/17 in Chicago:

I am going to try to follow my earlier bullet list of notes to continue my story but my memory of the details is no longer clear, so no promises here.

Early Start:

Had lots to do this day so we awoke early (6AM- I think).  Although we gained an hour,crossing time zones the previous day; it felt more like we lost one or two.  We showered the previous evening to enable us to be more efficient, time-wise, this day. We needed to be at the hospital, a half hour’s drive away, by 10AM for a day of pee-op testing.  We also needed to checkout of the Marriott Courtyard as after my testing we  would need to check in at the Hyatt Regency Hotel, where we stayed for the remainder of our time in Chicago.  So after getting dressed, we packed most everything, then went to the lobby for breakfast at the cafe there;  I’ll tell you now, everywhere we went in Chicago, we met the nicest, most helpful people ever but this cafe  had the cheeriest staff of all; I don’t think that I could ever be that cheery so early in the day!  They were like extra rays of sunshine :D Some may have found them to be sickeningly sweet.

After breakfast, we returned to the room to brush my teeth (an absolute must for me, after every meal); finished packing, then headed out.

Incorrect Address:

Our itinerary for the week was jam-packed into one unorganized paragraph in an email, so I needed to scan it to find the address for our day’s schedule.  I accidentally gave, to hubby, for programming the car’s sat.nav. system, the address for the next day’s appointment which we realized after parking in the parking garage; however, once we got back into the car and reset the navigator, it told us we were at our designated site. Phew; as it turns out, the various buildings that comprise the University of Chicago Medical Center, although having separate addresses, are all connected, so we stayed parked where we were and ventured off to the maze of buildings.
Long day of Tests & details of trial & surgery - We entered the building most easily accessed, across the street from the parking garage, received directions to the correct place and were met by the trial coordinator for the Chicago site, she (Regan) was so sweet and adorable, I just had to tell her “you are really cute”; hubby, somewhat  awkwardly, I think, confirmed what I said and she thankfully responded and mentioned that she hears that often, so, needing to be my unique self,I asked if she has before heard it from a woman; apparently, I was the first. :-)

She then lead us to her office, where she went over the details of the clinical trial and explained the surgical procedure, which would be dependent upon the group into which group I am randomly placed (stem cell recipient or placebo), both would involve the placement of an apparatus screwed to my head, to allow the doctor exact alignment to the portion of my brain where lies the scar tissue from the stroke and prevent me from moving my head out of alignment (I imagine some of you are cringing now, I did when I heard it, but they don't use pointy screws,they are flat screws,used like anchoring clamps.  I have a photo of me in it but it's a rather unflattering photo so I'm not yet sure I will post it here..   Then I was told that if in one of the two stem cell recipient groups (the only difference between the two is the total number/count of cells that are to be implanted) it would entail what they call "bore-hole" surgery ( a hole is drilled into the scull for access to the brain and the stem cells are placed into the brain, at the site of the stroke's damage, using a very long and thin syringe needle; inserted a total of 3 angles and depositing cells at 5 locations on each angle. If in the placebo group, then they would only drill a tiny bit into the scull, not to the brain,and nothing is implanted.  It was about this point that I would be lightly sedated but awake for the entire procedure.  I must have appeared horrified by this news as, Regan then reminded me that I can drop out of the study at any time, if I wish.  I told her, "No,no, I've waited so long and have come his far, I'm all in!"  But there was whining....

Whine, good sleep with Propofol:

I was so looking forward to getting some restful and refreshing sleep, which, from experience, is a sedative that provides such a sleep.  Hey, maybe that's why I'm still extra tired, four weeks later...I was given Propofol but didn't receive enough to put me to sleep... maybe it has the opposite effect of feeling refreshed when not fully administered?  Need I mention that this is the medication on which Michael Jackson O.D.'d?

OK, SORRY, I'M DONE FOR TODAY - If you are one of my friends with whom I gather monthly, I may not be attending this weekend (not yet sure) but don't worry, my health is good right now, no signs of improvements yet but also no ill effects.


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