Thursday, December 29, 2016

8:45 / 10:45 Shunt surgery / Post Heart Ablation Appt.

😃It seems sort of hard to believe another Christmas is over and another year will soon draw to a near!? I suspect i'll be writing this post over the next week (this was in fact true, I've edited and changed a few things so it makes sense!) but have had so many things on my mind the past few wks. From feeling guilty in a way for my oft to opinionated self (in trying to help people, not that I think I am better than others, if there's 1 thing I know, I most definitely know I am in no way superior to anyone and in fact often feel guilty for all who help me/support me and for what I feel like is so little support I can give in turn).
 I guess what I mean is truly being able to offer useful advice, being able to help people more  and at times recognizing when to just shush. I'll be the 1st to admit I'm not always good at this!

Going in to this new year with a surgery the day before the New Year (tmrw) and having had a virus or something since Christmas Day but no major symptoms other than hoarse voice since and a sore throat that 1st day I am hoping I get cleared for surgery tmrw.
I've talked to Neurosurgery several times over the past few days, they want to go ahead with surgery given it's primarily just been the hoarse voice but ultimately they are leaving it up to the Anesthesia Team i'll have so I won't truly know till I am checked in at UW. I am praying! Really it's just that the catheter seems to be irritating more and further areas so while headaches have been pretty darn good (i'll miss that!) the rest is enough to drive me to want to drink, except I don't drink 
    The abnormal (coiled) catheter. 2nd pic (next to it, right after the LP   Shunt placed) what it should look like.

I saw my Heart Rhythm dr. earlier this wk; a f/up Appt. from the repeat ablation we did a few wks ago. While heart rate is back in the low 100s again, it seems from the EKG done today, right before seeing Dr.Kovach that while heart rate is back to being to high it is still different than before we did the ablation.
 From what he feels based off that EKG and depending upon what he sees when gets and reviews the Zio (Heart) monitor I did over 48hrs he had a few thoughts.
 If heart rate is in fact coming from a different area in the Sinus node this is better from what he said though i'll admit I can't remember why 1 area is better than another but he was/will be pleased if that is the case.
 Overall if heart rate stays high though once I am over this virus then he just said we'd likely revisit restarting the Ivabradine which unlike some of the other heart meds I take is more specific to try and get heart rate down and works on a different area of the heart than do most classes of meds including the others I take.

He also said if the area where this fast of rhythm is coming from stays where it is/shows on the post ablation clinic EKG he would hesitate to go back in and "hammer away at it more" (lol, I didn't take any notes but distinctly remember that comment) as he has fear that we'd very likely end up with need for a pacemaker then.
  It is basically a careful balance of managing symptoms/controlling secondary affects this added work from the heart beating overly fast has on my heart muscle and the mechanical heart valves and not doing to much that we cause an issue in the opposite direction (heart not able to beat enough on it's own).
I'm not sure why as it doesn't seem a common issue in MPS but we had issues almost from the start after we replaced the aortic valve and ended up completely re-doing that 6wks later and this new (Mitral) valve which we replaced a year ago this Jan is showing moderate stenosis (narrowing) in the new valve already. Not ideal!? I do know that's partially why the 'whole exome' testing was done by my BCH Genetics Team as they and my Cardiologist where interested if there was perhaps something besides just MPS going on, I guess.

The truer test re heart rate may be what the 48hr monitor I wore a few days ago shows, re does that show heart rate primarily coming from the same area the 30sec EKG in clinic showed? If it is primarily coming from this new area that is at least, possibly more promising.. It'd be fantastic if heart rate itself where down as that seems to really affect my breathing and SOB feeling (is intermittent, not constant and more of a 'trying to get a deep enough, easy enough breath of air' vs 'I've just run a distance and short of breath/trying to catch my breath now' feeling) but any improvement is an improvement, right?

 Since I f/up with my Cardiologist a couple wks from now Dr.Kovach just said he'd try to stop in when I see Dr.Earing (Cardiology) in a couple wks (14th), see how various symptoms and heart rate are. He was concerned with those symptoms and tmrws surgery and was that the cause of the increased heart rate (I tend to think it wasn't as heart rate trended back up within a day or so of the ablation) but wants to make sure the symptoms aren't related to the virus I seem to be battling now (is sort of a weird one, kind of wants to be a virus but knock on wood hasn't been to bad - am praying stays this way and goes away completely)!
 We'll decide perhaps at next Appt (but not sure) if we'll re-add any meds (the only 1 I'm not on right now is Ivabradine, which ironically of all the heart meds I take is also the gentlest/least-to no side effects!). Otherwise I take Digoxin, Lisinopril for heart muscle/help heart overall primarily (I think I got what they are for right) and then baby Aspirin, Lovenox injections and Lasix + Spironolactone for fluid/help heart overall.
 Ah irony, you kill me sometimes!

Non-the-less I personally think the heart rate is unrelated to this 'whatever it is, whatever my body is doing' and more related to the usual heart rate issues we've been dealing with, even if originating from a different area but we shall see.  Either way is nice that the ablation seems to have had atleast some impact!
Overall otherwise  symptoms wise the shortness of breath is there some, I have felt incredibly tired and incredibly uncomfortable (this last 1 from the Lumbar (low back) shunt catheter which either seems to be shifting (?) or just in general causing irritation b/c of where it's been sitting out of place. RE the SOB and tired we're hoping is maybe just related to the virus my bodies deciding what to do with.
Whatever it is I HOPE symptoms go AWAY for good, each day has been less of a hoarse voice so am really hoping will just be good for Fri! It's not even that I'm thrilled to be doing this surgery as I'm not, I'm anything but BUT then at the same time holy crud the low back/mid-back discomfort is something I can't even explain! And when it gets to a certain point (not pain but seeming swelling) then it's affects little things (hard to explain but I've talked about it here before) that's SUPER annoying!
Will be nice when that's just working right again! I'm sure i'll miss the spinal fluid leak I've had going on as that has been reeeaallllyyy good but the rest is just annoying/uncomfortable!

In any case will try to update sometime in the next few days if surgery is a go tmrw (if Anesthesia gives their ok).
Thanks for stopping by,
                                                                 Zan and I
                              My Sister, myself and my niece (we do this every yr)
Happy New Year! I am truly blessed by so many people and things in my own life! It's been a tough year at times, with changes to my Provider Team, quite a few more surgeries  and other things and yet it's another yr. i've beat MPS!


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