December 20, 2011
On this 1st night of Chanukah I’d like to wish everyone celebrating a very Happy Chanukah and may you have 8 beautiful nights with your friends and family!
And hopefully everyone is done with whatever holiday shopping they need and can get rest and relaxation in during their holiday.
and for everyone awaiting Dec 25th for whatever reason strikes your fancy (religious hullabaloo for JC’s birthday or family time around a big lit up tree and stories about a jolly rotund reverse-burglar, aka Santa)…
December 17, 2011
December 16, 2011
Our trip was definitely interesting. Being that this is a major climactic point of the film I can’t divulge too much in the way of information I can at least tell you that we got some phenomenal footage. The people at the clinic were fantastic to work with and we had full access to film all of my diagnostic procedures. A big big Thank You needs to go out to Traci, the PR rep who’s been working with us since this past summer.
Stills coming, more details later, working on sorting and tagging footage now.
December 16, 2011
a mix of photos I took on my phone and screen captures.
December 7, 2011
We got the Mayo Clinic itinerary this week. We fly out there Monday (little leeway in case there’s any snow storms to delay us) and everything starts Tuesday. Here’s a quick run down of what’s in store.
Tuesday’s schedule (starting at 8am):
Signal Averaged ECG
CT Scan of my Heart
trip to the Pacemaker Clinic to meet with a Nurse Consult to turn off my ICD for the next test,
Exercise Treadmill Test (Stress Test)
Wednesday’s schedule (also starting at 8am):
-meeting with Geneticist, Dr. Kirmani (looking into the possibilities of Ehlers-Danlos Syndrome being linked to our heart problems)
-meeting with Dr. Ackerman
As a director I’m very excited to get this footage. It’s going to be really amazing and I’ll get to really dive into the emotional aspects of what going through diagnostics can be like for a patient.
on the other hand…
I’m the patient. I have to go through it all over again and the some in two days… it’s alot to process and it’s bringing up things I thought I was over… but I guess I wasn’t quite done with all of that yet. I’m nervous but I’ll be alright.
November 30, 2011
Hard at work starting the process of organizing all of the footage and prepping it for the editing room! Just wanted to give you an idea of what we’re up to in between shoots. Still hard at work plotting out how we’re going to enter into full blown post production mode.
originally posted at 2am –> yes, I am a nightowl
November 29, 2011
Just wanted to give a heads up on donation information.
If you donate you will still get AWESOME SWAG in return!
For details please visit our Donate! Page.
All previously made donations will still be honored, don’t fret. We’re assembling the email lists for extra updates (bonus videos that will only be accessible to sponsors of the project) and we will be sending out more swag as it becomes available.
November 27, 2011
-ICD check up with Dr. Ovadia
-scheduling filming for the rest of December
The schedule will be dependent upon what happens at the checkup. My sister, Allison, is due for a new ICD. At the last appointment her device was slowly approaching ERI (elective replacement indicator) and we’ll find out if it’s there or not.
The uncertainty’s mildly annoying but at least it falls when she’s off work (even if it will be during the holiday).
for more info on the nuances and functions of an ICD, check out THIS ARTICLE. Little intense on the details, and yes, focuses on the fact that its still the misconception that only elderly patients have them, but it’s very informative on the device’s functions and makeup.
November 23, 2011
Talked to one of Dr. Ackerman’s assistants today. Starting December 13th I will be live blogging (to the best of my abilities at least since I’m still fairly certain cell phones aren’t allowed around most of the equipment).
Now, what tests will I be going through? So far the following has been scheduled:
EKGs focusing on looking for Brugada Syndrome and Arrhythmogenic Right Ventricular Cardiomyopathy
24 hour halter monitor
treadmill stress test
It feels like we’re backtracking a bit but since we’ve yet to get diagnosed, it would be silly to not do tests I haven’t had done since I was 13.
i was actually more surprised that they didn’t put in an order for a Tilt Test but more tests can be ordered if they see a reason for it.
Now, on to planning how one films these tests.