Monday, June 29, 2015

Uncertainty re Shunt plan, EP (Heart) Study details (scheduled Weds, July 1st)

I hadn't heard from Dr.Bragg's office since last Monday's Appt (she tapped the shunt, took off some fluid and had asked me to let her now how it went, which I did + she was going to talk to her Secretary after this).
The actual headaches have been pretty intense at night and in the mornings until I am up a couple hrs. This morning they where slowwwllllyyy getting better but did not finally go mostly away until I had been up, driven to Milw and at Infusion so in entirety a 4-5hr period and is still there some after that ebbing and flowing throughout the day. Yuck! My Pharmacy has been trying to get a new script for ODT Zofran from my PCP but they keep calling in the tablet form so I am thinking maybe I should ask Dr.Bragg's Nurse if she would refill it. I do have a bit left but definitely one of those scripts I do NOT want to run out of!
Anyways, I figured I'd give it time re calling about the appt f/up , I already feel like a pain in the arsh patient (I don't know I just do, even if as a patient I think we as patients have to advocate for ourselves) so I finally called late this morning (Monday). Her Secretary wasn't aware of anything, hadn't I guess talked to Dr.Bragg since last wk's appt on Mon. (atleast about my situation/case, I would imagine they must have to talk about other cases, not really sure how that works, Dr.Bragg had mentioned something about she was going to talk to Anna but maybe she didn't have a chance, who knows) so Anna looked up the clinic note and said she was sending a message to Dr.Bragg to see what she was thinking.
Anna just asked that I call her back either later this afternoon or Weds (I was at ERT till 6 and kind of got distracted doing paperwork, other calls and to be honest probably just hate calling so didn't. Like I said I do feel like a pain (not that Anna ever make ya feel like it, she's very nice).
She had said if we didn't talk today to make sure and call her Weds as today and Weds are the only days she is at the clinic this wk. Weds of course is the EP Study so I am praying I get out of that in time (takes anywhere from 3-6hrs) and not to distracted I forget to call her back and see what she finds out. I'll basically be sitting still (have to lay still, hoping they'll let me sit up with my legs straight) for another 4-6hrs after so hopefully call during that time.
She (Anna) had just said if Dr.Bragg was thinking anything valve wise w the shunt she'd get it scheduled then when we talk. I think Dr.Bragg may be out the wk after next or maybe it was just a day, not entirely sure so I don't know what we'd do schedule wise if she is thinking swap the valves. I am a little nervous about this all, not that I don't trust Dr.Bragg but when feeling better is in someone hands and you don't know the plan that is hard.
Curiously, I was looking through old files on my phone/fb and came across a comment I had posted regarding when we where first trialing the 2nd external drain to see if a 2nd shunt could help. In that I talked about how Dr.Bragg and her Partner thought equalizing the pressures in brain/spine w the 2 shunts would help - pretty much what I've been wondering given the significant stiffness and secondary pain I still have in spine/neck and have been getting intermittently in my spine since the shunt surgeries and going down to just the 1 LP Shunt in May. Doesn't mean much now obviously b/c clearly I cant do anything myself but was sort of funny to come across that post now when the very issue has been on my mind so often lately!
> Electrophysiology (Heart Rhythm) Dr.
I can't help but think about over the past couple wks, working w this EP Heart Rhythm dr. has been the COMPLETE opposite from the open Heart surgeries and although I didn't dislike that Surgeon (but also didn't know him, given out of 2 OHS I met him once) the communication w this dr vs my OHS Surgeon has been night and day, thunder and lightning different!
There where things we couldn't really know at the initial EP Appt re the Heart rhythm (Electrophysiology) Study and yet he has been really great about sharing information via email, trying to coord. with the Anesthesiologist (airway dr.) that did both previous OHS and the separate TEE + b/c she likely can't be there Weds he's taken information she shared with him re airway mngmt and shared w me he plans to share this with whoever we do have for an Anesthesia dr. on my/our case. He's also shared info re where he is in the approval process re the Ivabradine (heart failure) drug and what he thinks over all.
I spoke w the Anesthesiologist I mentioned above and she like I said spoke w Dr.Kovach and his Team to give her anesthestic recommendations and he was totally good with both my asking initially if we could try to have Dr.Taylor assigned to the case and then with her talking to him.
In other words he seems to have nailed COMMUNICATION as well - I feel like between him and Dr.Earing (my Cardiologist, both in the same clinic) I have a really great heart team for managing these issues. Albeit no patient ever wants to add yet another Specialist to their care team (in my case this makes #13 I believe) it is so nice when you do need to add someone that the 1st try turns out amiable, caring and seems to really want to make a difference.
I feel like as perhaps frustrating the 2 Open Heart Surgeries where as far as communication with my Heart Surgeon 2 yrs ago (the Surgeon was very good I just was not impressed w/the lack of communication between he and I re he never once explained things to me regarding how he felt the 1st surgery went and wasn't until my Cardiologist asked him to at the very least call me while I was still in-pt after the 2nd OHS we spoke some. I never spoke w him at any point between that 1st OHS when we knew things where failing, the 5wks in-between during weekly Cardiology f/ups and Echo's and then never the morning of the 2nd OHS or in-person after. -
Although I had already known how much I appreciated Dr.Bragg and how out of the box she always has seemed re communication, explaining her thoughts and explaining what she felt/feels issues are I REALLY figured out after that just how special she was as far as her personality as a Surgeon.
That frustrating experience all said once Dr.Earing does decide we need to replace the Mitral valve I probably would opt for the same Surgeon, bc I know he knows his stuff, I just would make sure things where better shared communication wise after!

As far as how long Dr.Kovach expects the EP Study to take he said in his experience they generally go anywhere from 3hrs to 6hrs depending on anatomy (such as any difficulty threading the catheters to the heart) and if they find an arrhythmia and if so if they can ablate it.
After the study is done, which will be done under conscious sedation then i'll have to lay still for 4-6hrs before being able to go home. Per my Cardiology Team I also am staying on the Coumadin during this so I imagine they'll be extra cautious about preventing bleeding after.
He also said he has been in contact with the company that makes/manufactures the Ivabradine re "procuring" it (lol, that made me think of dead people, not sure why I had read that!) and he hoped we'd have access to it, if we need it within a few wks after the EP Study and thought although it is very newly approved by the FDA (April) we may not need a special IRB approval from CHW but he was checking in to that. For my insurance we'll have to submit drug prior auth exceptions. Fun, fun stuff, hey? =)
Will try to update either Weds night or a little later in the wk how the procedure and anesthesia went,
Thanks for stopping by,

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