She is out something like the 16th-28 (she told me this) and then the 1st few days of Nov. so once back i'll have a few other things better sorted anyways. After talking to her Secretary today I had 1/2 a dozen other phone calls to make (I was at ERT so gives me something to do during that 5-6hrs I guess to pass the time). I was able to get the CT Scan scheduled (she uses this for computer assisted planning/placement of the Ventricular part of the VP Shunt), the pre-op is scheduled (closer to the end of the month.
I asked Dr.Bragg if I could see her next wk on 1 of her clinic days to potentially have her tap the shunt and remove CSF. She was amenable to this (love her!!) and so this is scheduled for Thurs. Given it doesn't hurt when she does this BUT does help for headaches for a very short period (is only a few hrs but for whatever reason really does seem to reset of sorts some of the other associated symptoms for a bit longer). I am grateful she's willing to do this when she clearly wouldn't have to. Depending I may do the same the end of the month when she is back for a few days before she is back out again for a few days leading up to shunt placement surgery.
Dr.Kovach, Heart Rhythm dr.
I seen Heart Rhythm dr. today., At the last appt they talked about upping the Ivabradine dose to better control heart rate which in turn the hope is would better help oxygenation between the restrictive lung issues and heart and perhaps symptoms.
Dr.Kovach essentially said today b/c heart rate was "still relatively high" he'd up the dose to 7.5mgs 2x's a day (from 5mgs, 2x a day) and do a Holter (Zio patch) monitor in 2wks. If this doesn't bring HR down he said he'd likely try 10mgs per day as long as I con't to tolerate the med ok (so far no side effects which is nothing short of amazing with heart meds) and if that still didn't bring HR down enough he'd consider "adding something back". This option would be less than ideal as I already take this Ivabradine, high dose Digoxin (for heart muscle), Spironolactone and Lasix (both for the heart failure, fluid control) + of course the Coumadin. That is already a lot of heart meds in my opinion! Hopefully this new med adjustment will help bring HR's down more consistently. =)
If symptoms aren't helped by this adjustment or they opted to go up to 10mgs 2's/day it's likely our last hope before they'll do the mitral valve replacement (open heart surgery). Dr.Kovach made the comment if we get to the highest dose of Ivabradine and still not ideal situation after he mentioned potentially adding another different heart med back he said "or do we just bite the bullet and fix your mitral valve (replace it) and is that the only way we get your heart rate under control". (something to that affect, I wrote it down but perhaps not exactly word for word).
He mentioned seeing after the VP Shunt if heart rate is down and then the shunt replacement brings it down even more we'd have to adjust the med dose to a lower dose again. This of course would be a good thing, though I am skeptical this will occur as heart rate has been an issue for the past 2+ yrs since the 2 OHS despite our having had 2 shunts in place all of that time leading up to May. Although it was never perfect the 2 shunts was better than it is now as far as controlling intracranial pressure but seemed to ever have little affect on heart rate.
As far as f/up, HR/Med dose adjustment (if further needed) Dr.Kovach is opting to do f/up the wk after the VP Shunt surgery as he is on service (on call I guess?) for his Dept. the week before my surgery which would be a month from now/starting this med. He is doing the Zio patch as I mentioned above 2wks from now and said he would review that and based off those results I guess would perhaps make med adjustment before surgery. I am not totally sure on that part.
Either way my Cardiologist, who I see Dec. 1st for a 3mo f/up and 6mo Echo, (from reading his notes, things he's said to me if I understand correctly) seems to believe even if we do OHS it will help some symptoms but not all of the symptoms given (I guess?) high heart rate and lung issues. I was re-reading some of the clinic notes prior to today and have to admit I kind of glossed over some of the info previously about heart rate causing or affecting the increased pulmonary pressures and the thoughts this was cause of some of the symptoms.
One other note, after initially having problems again with the Port yesterday, which thankfully worked itself out vs our having to do TPA again (clot buster) I was able to get INR drawn after ERT. My Cardiologists Nurse called today and albeit surprisingly (but a good thing!) INR is in-range already at 2.29. Jane said to me something like: "your levels never go up this fast, usually it takes your body a good couple wks" so we'll recheck in 2wks to make sure it isn't to high.
Perhaps the best part of today was having lunch with my former ERT, Infusion Nurses. Both where my Nurses up till last yr. when the CHW Genetics clinic closed and both still do my INR/Port access now at CHW so I do see them but still very nice to catch up a little. =) All 3 of us just met in the CHW West Café Lobby for about an hour today prior to my heading up to the Heart Clinic.