Thursday, June 11, 2015

New Heart Rhythm (EP) dr., Appt and Plan..

Today was the Appt with the EP(Heart rhythm) dr. at CHW which is also where my Cardiologist is. Seemed to go well, his NP was very nice and this dr seemed well versed on my background history, everything from the prior heart surgeries, underlying MPS and the shunt issues, etc.
Before I get to the nitty gritty I have to share this funny comment from his NP, we where talking about the various meds and especially the Lasix and Spironolactone (to get excess fluid off). She says to me after we discussed the rather large doses "How do you get any sleep at night?" Lol, I have friends who tease me about sleeping late but in all honestly much of it is b/c of the meds make me get up often 4-5-6 times a night (the other night I counted no less than 7 times I woke up) and is even worse when having shunt issues for whatever reason.
So as far as the EP dr he had talked to my Cardiologist who filled him in on my prior history, 2 OHS and our issues getting on top of the overly fast heart rate despite the many, various classes of cardiac meds I take and we have formerly tried including specifically at this moment a high dose calcium channel blocker and digoxin which works on the heart muscle itself.
He mentioned in the EKG just done there was an area that made him slightly suspicious the fast heart rate may be coming from an ectopic atrial tachycardic (early beats from the atrium of the heart). Otherwise he and my Cardiologist feel it is caused secondary to the 2 prior open heart surgeries and is an inappropriate sinus tachycardia "this name b/c we aren't very creative with names and it comes from the sinus node of the heart".
In any case he laid out a multi-step plan to figure this out and try to get on top of it. He ordered a 24hr holter monitor which is essentially for anyone who doesn't know a 1 day long continuous EKG monitor so he can see if he can find where the error is occurring from.
Although this will be done Fri afternoon i'll just return it when there Tues since I f/up with my Cardiologist Tues for an Echo and 1mo med dose change. They'll download the results and review.
He also is scheduling an EP Study which is essentially a study where he goes in via a catheter in the leg (groin) and threads this up to the heart where they can then map the various heart rhythms to see if they can find any abnormal areas such as ectopic atrial tachycardias which I believe he said could be ablated (basically gotten rid of w electricity I think via the catheter).. They are planning to coord this study w the Anesthesia (airway) dr. who did both my OHS (heart surgeries) and he gave me the option to do it w conscious sedation or to be completely asleep (full airway support). I've opted for the conscious sedation.
If the EP Study comes back normal he said he planned to begin working on off label approval right away (this wk apparently) for the new heart failure med 'Evabradine', a very newly FDA approved drug for innapropriate sinus tachycardia/heart failure. In my case he said I both do and I don't meet the qualifications for it's market approval given I have clear heart failure but he feels he'll have an easier time getting it approved via a special IRB at CHW w this approval from the drug people. I don't quite understand that but if he does that's what counts.. I know he also asked about my insur. and said it can be costly to which I commented I had checked w my Insur. Nurse Case Man. to see if it was on formulary and she said they'd just have to write a special prior auth for approval. I also commented that DHP pays for the weekly enzyme drug to which his eyes got a little bigger and he said "oh we shouldn't have any problem than!". LOL. I know my Cardiologist apparently knows the Medical Director at DHP so he'll get approved what he needs/they want and we've not had medication problems before.
As far as everything getting completed and starting the med if we end up w that Dr.Kovach felt this could be completed in a months time and he wouldn't plan to start it till after any EP Study anyways which he said he planned to do "in the next few weeks". He mentioned July was pretty wide open for this type of study at CHW. They did have the option to do the study at either CHW or next door at the Adult hospital but he prefers it be at CHW which I guess is ok given the Anesthesia dr is there.
He said to me "hopefully you can get the shunt issues sorted out in the next few wks, I am not sure what made him make that comment other than the NP was taken aback I'd just gotten out of the hospital Sun, had 3 surgeries and was still at the Appt. (my philosophy is I certaintly didn't really feel like going BUT I also could chose to either sit at home and feel miserable or I can go on with life, try to distract myself and try to not think of how bad I feel much of that time. Distraction works better I think...
As far as this new med if we started it I asked if helping the heart to beat better and thus oxygenate better could help the mitral valve, slow progression of damage and he said it likely wouldnt have a lot of affect on valve disease progression. "The mitral valve's gonna do what the mitral valves gonna do". It's possible it could help slow progression but he didn't seem optimistic about that..

In any case lots going on as usual between this and other med stuff, the shunt stuff, etc. and I see my Neurosurgeon Monday so prayers are always, always, always appreciated!
Thanks so much,

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