Tuesday, September 1, 2015

Cardiology F/up, post Heart Studies. Neurosurgery f/up Thurs.

Follow up today with Dr.Earing (Cardiologist) - both the usual reminders of what's ahead and all that's going on (as if I can forget, living it day to day) and some funny moments, good laughs I have to share. =)
Re the Mitral valve/heart stuff, per the Heart Cath/Heart Rhythm Study back in July and the Echo back in June we know the mitral valve is in the severe range for leaking/narrowing and we know pulmonary pressures (having to do with oxygen between the heart and lungs I believe) is elevated, (which isn't a good thing) and we know there is signs of heart failure despite all the meds we've tried.
We've been on the Ivabradine for 2wks now, with heart rate today at 92, per the Fellow (a graduated MD done with her Residency training to be an Adult Congenital Heart dr.) Obviously the heart rate isn't ideal as the goal of the Ivabradine is to bring heart down to I believe below 70.
This said, studies done in Europe show it can take up to a month to show significant improvements so we're all (Dr.Kovach, Dr.Earing and myself) kind of hoping for that.. No one on my Heart Team is ready to take the significant risk of a 3rd open heart surgery yet. As Dr.Kovach says "we're pulling things out of our pocket to try and help you, to try and avoid surgery as long as possible".
Dr.Earing just said again today what Dr.K said last wk, should HR not be consistently where they'd like or symptoms not be a lot improved they'd try doubling the Ivabradine dose (10mgs 2x's/day). Given it doesn't seem to have side effects (anyone who knows/takes heart meds knows this IS kind of AMAZING!) I would be ok with that, if needed. Better than rushing to OHS!
Dr.E's exact words (or close) regarding heart surgery, which might I add, ironically it is 2yrs ago Thurs when the 2nd re-do AVR/Konno procedure was done where: "It's bad but i'm not ready to push the button yet, we just wait as long as possible and hope this med works. You know I'm dragging my feet as long as I can on doing this".
Separately Dr.Earing brought up about the Elmiron, the drug my Metabolic Genetics dr. at Boston Children's had called him about. Dr.E is interested in the drug and thinks we should give it a try albeit he cont's to feel now is not a good time given the many other complicating issues going on we're sorting out (heart issues, shunt issues) and worries that would make an already complicated picture even more so. I don't disagree with him and am fine waiting, I don't think right now would be a great time to start it. The Ivabradine also appears to affect the Coumadin dosing so they've adjusted that dose upwards and i'll test again next wk.
Insurance (funny stuff)
I don't quite remember how we got to talking about Insur., other than maybe Dr.E, when he came in made a comment along the lines: "I don't know how you managed to get the Ivabradine covered but I think you need to come work for me, then when my other pts. can't get their stuff covered you can just do it for them, for me". - LOL!
I know I said to him, laughing, you don't really question how I got it covered do you? =) His response, something like, no, I know you, but it's still amazing and you do a great job on this".
Sometimes my stubborn, sometimes pushy and persistent nature comes in handy BUT it is nice that he realizes it's not simple stuff to deal w the insur. stuff and appreciates what it takes as a patient to be doing what Providers normally do. I don't mind, doing this sort of thing, it makes me feel like I am helping with my care but I really appreciate that Dr.E and Jake, my Pharmacist (Skywalk) are kind enough to want my help. =)
Dr.E made the additional comment "I don't know how you do it" as he knows exactly how difficult some of my Insur. company stuff can be, he has other patients w the same/similar Dean coverage. albeit in my case I work directly with a Nurse Case Manager and have in place 'out of network approvals for a yr at a time for Echo's and Appts with him. I do not believe that is the case with other of his pts. w the same insurer.
His Fellow said something along the line after that comment by Dr.E. about "I needing to work for him", "I need to take you with me". LOL, I honestly don't think anything I do re getting Prior Auth's in place for Dr.Earing, Dr.Bragg and some of my other Providers is all that special nor do I think working on the med stuff on my own to help them is anything special but I guess it's something few pts. must do? Must be part of having an independent, I want to get this taken care of streak? In any case.. =)

And on a last note, just as Dr.Bragg always asks me about the heart stuff, Dr.Earing always asks me about the shunt stuff. Before updating him he says: 'I know you just had something done, dumb it down for me, I'm not a Neurosurgeon, I know you know more about this stuff than I do". LOL, that made me laugh! I kind of doubt that's true but non-the-less, pretty funny =)

Afterwards he said to me as we (Dr.E, Fellow and myself) where figuring out the new Coumadin dosing and f/up timing (3mo Echo/Appt unless anything changes, Dr.Kovach keeps him updated and I see him the 24th) he says regarding the shunt stuff:
"I just wish this Neurosurgery stuff where easier for you". Obviously I do to, but most of all I so appreciate he doesn't question Dr.Bragg, he gets that she's doesn't make hasty decisions. He gets that it's complicated and he appreciates she hasn't given up or abandoned my care (he saw all the issues with the 1st Nrsgn and the subsequent issues finding 1 after that who would not only follow my care but treat me and 1 who would believe me/believe those of my drs. like him who did believe I was having a shunt/pressure issue before I found Dr.Bragg).

I absolutely know he is protective and at times questions some aspects of my overall care but I am not sure he has ever had reservations about Dr.Bragg despite how complex of times we've had. I appreciate that b/c I really like him. =)

Neurosurgery F/up, Dr.Bragg, Thurs.
On a side note, I am sitting here, having taken to much zofran already, my stomach is super on edge, in all honesty I have a feeling unless I take some ativan (yuck) it is going to end up with my throwing up which super sucks. I am trying really, really hard to ignore it. Ugh, I wish my stomach would calm down!
Anyways, I see Dr.Bragg Thurs., f/up from the surgery. I am a little nervous, not b/c of actually seeing Dr.Bragg but b/c I am hopeful she will have an idea how to help when I see her for f/up. I am still hopeful she'll agree to put back the 2nd shunt but I know I have to trust or listen to whatever she might propose or if she has a different thought.
I am trying to not get my hopes up but honestly I am so, so miserable the past week-ish I just want to feel better.

I honestly think the current valve works but I don't think it works as consistently as the Codman Hakim valve did, perhaps b/c it is smaller (?) and it seems to cause extreme nerve irritation in my mid-back + my low back has literally felt like the muscles are well on fire or something (the muscles down closest to my butt actually).
It is almost funny to me, the Codman Hakim valve didn't cause the nerve irritation and did atleast drain some fluid, not enough and seemed to work consistently, just again not enough.

This valve seems to work very inconsistently and when it does seems to help headaches some but causes the nerve irritation and low back stuff and well it just is a pain overall! Ugh! Out of any shunt valve we've ever tried I'd have to say the Codman Hakim's where the best even if not the best re how much drainage. To bad they cant make them so they drain just a bit more! I honestly just have wondered if that valve where in say the LP Shunt and another fixed valve where in a VP Shunt would it be really good or a lot closer to good? I think so but that's just me..
Anyways, from time to time I am getting what I can best describe as a 'zingy' sensation along the shunt tract so I feel like a bit of a mess! The pain between my shoulder blades makes things like showering, especially washing my hair which I do every morning harken back to the 1st LP Shunt I had. I am so hopeful maybe my Physical Therapist can help with this again but I do know without a doubt some of it has to do w the valve. It started some days after the new valve was placed and I think I just didn't notice it when in-pt as much b/c of sitting so much and I didn't shower everyday there. Who knows?
In any case the week cont's to be busy, I see the Neurology doc tmrw for botox (I'd have rescheduled given this week is ridiculous with Appts but had to reschedule in July and in Aug. and I think it could possibly help the muscles to. Tmrw night we have our last planning mtng before Sunday School starts in a couple wknds and then Dr.Bragg Thurs + PT (thankfully that is local) on Fri.
Thanks for stopping by, stay tuned,
I attached some screenshots from a heart rate app I have on my phone, this is not actually a significantly high heart rate for most people, it is high but not abnormally so I guess you'd say. In the case of myself per Dr.E b/c there is already the other heart meds including/especially the Digoxin (works on heart muscle, to help the heart relax) heart rates should not be as high as they are. Even rates in the 80s are uncomfortably high to him, in my situation due to the mitral valve mixed disease (stenosis/narrowing) and the increased pulmonary pressures/Heart failure.

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