Why that quote/title you you ask? (Which I came across in an old draft on here I'd never finished while clearing out old things I didn't need) but it's a quote I distinctly remember Dr.Bragg saying albeit she was saying it at the time to make me laugh I believe (was after an unusual shunt infection presentation and catch, per the unfinished entry where she and her 1 NP had just come by my rm and gave me the news of the unexpected infection (we all had thought it was gallbladder related, General Surgery was involved, Dr.Bragg was just managing overall picture - I'll miss her for that! Even when she didn't need to be a part she wanted to be there, to be involved, to help).
Cardiology / Electrophysiology (Heart Ehythm) Appts:
Today's Cardiology/Heart Rhythm Appts went ok, nothing to earth shattering (do I say that a lot?) though a med dose change and if that doesn't work possible heart procedure to consider.
Med wise although it's not a commonly used dose (the med is fairly new, having been FDA approved last Spring, about a year ago) but we are going to trial adjusting the dose from 7.5mgs to 10mgs which is the highest dose used and isn't used often. He isn't sure this will work as what little evidence there is on the med shows statistical difference in those pts. taking 7.5mgs vs those few taking 10mgs is limited (not significant). He commented something about with this particular med it seems evidence has shown at this highest dose the body seems to just break it down vs being able to process and use it effectively. He did comment though that each person responds differently and was worth our trying. He seemed to feel since it's a med I've had the least amount of (really no) side effects with and fairly decent heart rate improvement, prior to the Mitral valve replacement it is worth trying this increase. I think our average heart rate pre-MVR was around 80bpm prior the surgery after starting the Ivabradine though we also had several other meds to help overall heart muscle function and to help heart rate if I remember right, prior to Jan. That decrease was nice!
Unknown, Potential Heart Cath-Ablation
It really is an unknown if this will help but we all feel it is worth trying and Dr.Earing (my Cardiologist) when he stopped by felt the same. It is doesn't work or any problems Dr.Kovach mentiond potentially trying a different beta blocker or calcium channel blocker we've tried in the past as the nature of the heart rate/rhythm problem can change after a Open Heart surgery. We'd more than likely still keep the Ivabradine and the other meds I am on (Digoxin, Lisinopril, Ivabradine and 2 meds for fluid), at the current doses as these are used to help heart muscle function better and likely have some affect on heart rate now).
The other thing he brought up was he said he may consider and asked my thought re going back in via a heart cath (catheters threaded typically via the groin) and doing a heart rhythm study known as a 'Sinus Node Ablation' where they thread catheter(s) around the sinus node to try and ablate around the sinus node to try to get this to "chill out" (lol, that made me laugh seriously when he said that). In doing this approach we would bypass other "drug cocktails" and try this lesser used procedure which does carry the potential risk for causing to slow of heart rate though (I didn't think to ask what degree the risk might be or if that is just an unknown) and thus need for a Pacemaker.
I admittedly can't entirely remember what Dr.Earing and I talked about (I got about 3 or 4hrs of sleep last night, fell asleep around 10-11 and woke around 2, couldn't fall back asleep. Ironically I am editing this now a day later and same Thurs night and oh gee the night before that and before that... my body is exhausted and yet sleep seems elusive in those early hours I fall asleep fairly easily but can't seem to stay awake (pressure I think ) and thus other than later afternoon /mid evening I always feel tired.
In the interim I see Dr.Bragg next wk and fly to Boston that next (Thurs) morning. I am hoping I have a little more energy by then or at the very least I am hoping I get enough relief to feel decent for my flight on Thurs morning! I fly out of Milw., an airport I don't use quite as much (but am familiar with) and have a non stop flight to Boston. I'll see my Genetics dr. late the next day. ---
On a side note, I signed up/was interview' for a speakers bureau position with Genzyme, something Patients have to do a simple interview for and then that gets reviewed and if accepted by the Genzyme folks you go though a training process with your local Patient Liaison.
Will try to update soon, have a few questions for Dr.Bragg next wk so will update about those perhaps after I get back from the Marathon and Boston - I am super excited to see the many friends I have out there including the friends I am staying Fri-Monday with (Thurs i'll stay overnight in a hotel, close to BCH where Dr.Bodamer is). =)