I followed up with my Heart Rhythm dr. today at CHW. Mostly it was just to do an EKG 1wk after starting the Ivabradine for Heart rate and make sure there where so far no changes in QT interval (a potentially problematic issue).
I don't think he suspects this will be an issue but no-less is something that can become problematic with Ivabradine in some pts. (I have no history of abnormal arrhythmias minus the to fast of heart rate and on occasion Ectopic Atrial Arrhythmia which he suspects based off the EP Study/Cardiac Cath was more or less a non-problem.
As far as heart rate he said he had been hopeful we'd see some results by today but he also stated typically in pts. in my situation/type issues (Heart Failure, High Heart rate) based off studies in Europe they generally seen improvements/results there if there are going to be at the 1mo. time frame.
My heart rate today was 84-90ish which may not seem high to many but is concerning to them given I am on max dose Digoxin, I am on the 2 max dose meds to get fluid off and I now take this HF/Heart rate med which should conceivably work to lower heart rate but have not on their own. Additionally these rates consistently which I am or higher puts a strain on an already strained heart.
Should heart rate not change significantly by the 1mo mark he commented he would adjust the dose to double the current to take 10mgs 2x's a day. This he said is not often used but I am handling it well and with close f/up we're willing to try it if necessary if it improved heart symptoms AND bought us time to a 3rd OHS (Heart surgery). 10mgs times 2x's a day is the highest he said that is used in a small subset of patients and he would expect would help us. Hopefully we won't have to go there! =)
In order to get an idea what my heart rate is doing over a 24hr period he has me wearing a newer type of Holter monitor, this one has no wires (whohoo!) and is completely on the skin/nothing to attach elsewhere and try not to dislodge. It works a little differently than a Holter as far as what it records apparently.
I am hopeful this one won't cause the extreme skin irritation (but everything does so this to probably will) though in that case I guess just look at the flip side it's only 24hrs?
Because of my Port-A-Cath being on the L side the Tech did have to secure it mid-chest, directly over my OHS scar which admittedly wasn't all that comfortable when placing BUT I've certainly had worse. Only 24hrs, approx. 22 more to go.. =)
Zio Patch (Heart rate monitor)
Heart-Shunt
He did ask about the shunt stuff, how it went, what we ended up doing, etc. Simple answer to that I just said I think the shunt drains better BUT less consistently so more or less a wash, not a lot of improvement? I jokingly said one of these times i'll come back, you guys will ask about the shunt stuff and i'll say 'IT'S FANTASTIC!' =)
I do have faith, as Dr.Bragg says, "we'll get there", right? I am grateful he and Dr.Earing my Cardiologist never question this area though and seem to trust her, to trust she's got my best interest in mind and they both appreciate she keeps the heart stuff in mind.
He asked me if I thought we would do anything shunt wise in the next month (I just said I knew she was considering a few options and I admittedly hoped we could put the 2nd shunt back while explaining why I hoped this, that I didn't know if she would/if she did what her timing might be. Because I think it does sound (probably odd to say to someone, even if they are your Provider your (basically) hoping for something I said I know it sounds odd to basically wish for surgery (which I am NOT, I just want to feel better)!
He commented to keep him updated on this (I just said to him I thought perhaps if she did anything more indepth she would likely reach out to them though I wasn't certain) to which he said if we did opt for a more involved shunt surgery, that might cause more pain initially (to tissue/body) to let him know. He isn't opposed to us doing something he just said if we did end up doing a surgery and it occurred before the 1mo f/up he'd want to wait to asses how heart rate was reacting to the Ivabradine and any possible med dose adjustment.
^^ I know it sounds ridiculous and I said as much to him but even given as many things as I have going on in the next mo. I'd drop it all in a heart beat to put in a 2nd shunt or something else that had a good probability of helping the headache/pressure symptoms! Nuts I know.
Pic of Children's Hospital
Running for Rare Diseases (my Team MPS) Shirt
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