Friday, January 1, 2016

To a New Year.. New (post <3 Surgery) Blood thinner changes, New Year, New?

This post has been written over a few days - I should really finish it =)
I sent my Cardiologist an email, asking what the upcoming post MVR (mitral valve) blood thinner dosing would be.
It's a question I hadn't really thought to as at the Apot when we where discussing this next open heart surgery yet I know the INR level is different after 2 mechanical heart valves are in place and I  know it is handled a bit differently with surgeries.
Anyways he resonated back in fairly short order and just said INR has to be monitored more carefully + anytime INR falls below 2.0 we'll have to bridge when lovenox or heparin injections.
I am not entirely sure how that works then we surgeries pre/post a surgery but hopefully for instance in Dr.Bragg's cade she'll do as she's been awesome about doing and work with my Cardiology Team as needed was shunt stuff and in the case of my Primary Dr she's always been great about talking to my Cardiology Team and then to whoever is the Surgeon (say Hand stuff) to iron out pre/post op details w blood thinners. It all should be OK but I just like details!
In any case I really am going to sign off - below us the original, full post  from the past few days.
Happy New Year - May 2016 treat each of us well!
May the grace and kindness of God be with each of you,


Not entirely in a reflecting mood but I guess that's what a New Year does? Went out with my Sister, her hubby and a friend last night to a bar (totally not my thing, I don't really drink and was way to tired, feeling kind crappy to boot) but was ok. Honestly if anything it's a people watching galore and good for (if nothing else) reflecting on the past yr - which I know sounds weird but...
New Year's Eve prior to going to my Sister's I'd run to Madison, I had some labs (the gene mapping blood work and somewhat more routine (to me anyways) MPS/uGAG retest (something done every so often  my Genetics dr. in Boston and PMD had been wanting) so I finally got those done. Exciting stuff ;)  If noting else a little grocery shopping to.
Anyways so I wasn't really going to go with my Sister and hubby but they kept asking, lol, both know I don't really drink and my Sister wasn't really drinking either but what the heck, I guess, right? We played some pool, and pretty much just listened to the music (was decent but  loud). Was an ok NY-Eve and nice enough way to ring in the New Year though I admittedly was happy when I got home!

I was kind of thinking on and off the past few days about this past year and various things that have went on, changes I've made in my Medical Team (nothing to big, mostly the Genetics component), some of the surgeries (shunts especially, heart stuff and the upcoming OHS, the 3rd L hand surgery last Winter) and some of the ups  ups and downs we've had with the shunts.  - The really good moments, even if they don't last long enough and the seeming more often periods where the shunts are just stupid - they appear to work and likely are or atleast to some extent but is more (probably?) the shunts draining (which is good!) but this in turn likely causes the ventricles to collapse which in turn causes headaches as pressure rebuilds till it gets high enough causes vents to open and shunts to drain again over and over-repeatedly. A good-frustrating cycle which I wish there where an easier way to help!
On top of the shunt stuff, and the shunt infection (last May) which totally took us all by surprise last Spring shortly after I got back from Boston from the 2nd Marathon (Boston was 1st Marathon w the RfRD Team, the 2nd Team Marathon was in  Providence) and our at the time only putting 1 shunt back + trying various means to get away with 1 shunt building up to this past Nov. (I think that's when we put it back?) when we opted to in fact replace the 2nd (VPL) Shunt.
This although it's better at 1st and in a way now is just different is on another hand different then other times when we've had some issues but isn't quite as good as when we had 2 shunts before (which was never perfect then either but was some better than this).
This said I am STILL glad we have the 2 shunts back in place. I realize it might seem like, well if you have 2 shunts and isn't as good as before then why is it even any good and believe me it frustrates me but hopefully, maybe we'll figure it out and in the mean time I am still grateful for what is?
And well because the shunt stuff and any other stuff wouldn't be dull or exciting enough of course the heart stuff has taken up it's own good efforts in 2015 to? Between the heart rhythm/to fast of rate issues and trying to slow these down (I think in 2015 we tried no less than 4 different meds and eventually now (since last Summer) ended up with the Ivabradine (heart failure/heart rate) med (newly approved to market back in May), the Digoxin (helps heart function better), Lasix and Spironolactone which both work to get fluid off and then the 2 meds for the heart valve.
The hope had been that with the addition of the Ivabradine we might be able to help slow the continued progression of the Mitral valve narrowing and leaking but that did not happen. On Echo's done last summer and then this past Nov/Dec. the valve had worsened several more gradients putting it in the severe range along with we knew already last summer when a Heart Rhythm Study and Heart Cath where done (invasive tests to measure various things in the heart and heart rhythms) showed the blood oxygen from lungs to heart, having to do I guess with oxygenation (I think that's how it works, I am blanking on the right term/word off hand) where very high which is not normal.
This all taken together along with symptoms continuing to worsen we opted at the Appt back in Dec. (or maybe it was Nov, I can't remember off hand) to go ahead with the 3rd open heart surgery and replace the Mitral valve.
This is a surgery that in and off itself has been done before in an MPS Pt. but 3 Open heart surgeries have never been done in an MPS pt. so it's sort of an unknown but I also have 1 of the best congenital heart centers and Teams doing the surgery (and exact same team as before - Heart Surgeon, same Cardiologist, and Same Anesthesiologist as both prior Open heart surgeries and the other 2 heart procedures) so that goes in our benefit as they are all familiar with my heart and my Anesthesia dr is familiar w/my airway, endocrine stress hormone needs, etc. We'll manage. And most of all God is by my/our side and he knows his ultimate plan.
That surgery is, right off hand I believe Jan 21, I meet with Dr.Mitchell this coming week, pre-op Appt is the day before surgery and the Anesthesia dr. was working with her scheduler to try and arrange her schedule so she could be at either the appt with Dr.Mitchell or at the pre-op Appt. Dr.Taylor (anesthesia) has felt pretty strongly (which I am grateful fior!) we need to have a better immediate post-op plan in place (ie how long they'll leave sedated/intubated which varied a great deal between the 2 prior heart surgeries post op mngmt, etc) and wants to try and iron that out ahead of time. I appreciate she has thought about this and would like to try and have a better plan 1 in place!
I guess the other (potential) bigger issue with this heart surgery which Dr.Bragg (Neurosurgeon) and my Cardiology Team (both at different hospitals /cities ) have talked to each other about is my newest replaced VPL Shunt drains to the pleural space which is where chest tubes are frequently needed in heart surgeries. When she talked to my Heart Team they felt they may not need to place a chest tube on the R side so all agreed and opted to leave the shunt to drain where it does and if needed it could be moved temporarily in the surgery. I am a little uncertain should this be needed (it need to be moved) what they'll do with the shunt and plan to ask my Surgeon so I know they have a tentative plan in place, just in case but God willing it just wont be needed!? That said I just like to know my drs have back up plans in the off chance!
Otherwise I posted the questions I have for my Team which I'll ask at Tues appt /in coming wks in my last post and think those answers are the most important as far as knowing the plan and knowing my Team has their plans in place ie VPL Shunt (should it be needed), immed. post op mngmt, etc. Stay tuned :)
I guess otherwise I don't know much, will try to update after the appt w Dr.Mitchell this next wk.
I am also supposed to update Dr.Bragg/her Team on symptoms so we'll see I guess. I don't think there's anything she can do so there to not sure.

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