I talked to the Cardiology NP today (Weds night) and again this morning (Thurs) and they are doing a 24 hr Holter monitor (a continuous EKG) along w the EKG (remember the post I wrote a few wks ago saying I didn't think we'd have to do either of these things!? Remind me to shut my mouth in the future!) ;)
Dr.E (Cardiologist) will take this monitor results to the EP (heart rhythm) dr. then.
The recently increased Bisoprolol dose didn't do much to slow heart rate down so Dr.Earing's thought or plan was to make a new medication recommendation, likely from what Nancy (the NP) said a different beta blocker. They likely will call early next week with the Holter results and new med recommendation.
The EKG was fine and heart rhythm was normal (not exactly un-expected since it is a 6second snapshot out of a 24 hr day!) but the NP did say Dr.E was at least happy in that brief period my Heart rate (HR) was in the high 70's an improvement from immediately post both heart surgeries (July, Sept) where heart rate was high 170's, then high 120's while still in-patient and has ranged in the 80's-90's to low 100's (125 typical highest I think) since the last few months minus a few longer-higher periods.
Even when HR is running along at a faster clip I don't stop and take my pulse to see how fast it is as it doesn't change anything so those are just measurements from Cardiology Appts and from at ERT (infusion). HR overall doesn't get a whole lot faster or slower when at Cardiac Rehab.
I turn the Holter monitor back in tomorrow afternoon. The reasoning as I explained in the update after the Cardiology Appt a few weeks ago behind Cardiologist wanting a slower heart rate is so the heart has more time between each heart beat and thus (if I am remembering right) the heart gets more time to rest between each beat and isn't working as hard.
This week has been another chaotic week of appts betweem Monday and Weds being in Menomonee Falls for Cardiac Rehab, Tues at ERT (CHW), today also at CHW for the EKG and Holter hook-up and then tomorrow is Pain Mngmt (normal) Fup followed by dropping
off the completed Holter at CHW. Friday I am getting my hair cut and that is it besides actually getting normal errands done!
Sometimes I think (seriously) that a hand drill and a straw would make a better shunt than does the current shunts I have.
I mean don't get me wrong the 2 shunts I have worked reasonably well actually for about 6 mo (as a whole) and even though they weren't perfect it was still better than almost any other shunt system i'd had in the past. The past week and especially the past few days though has been quite aweful and I feel aweful-with mornings being the worst by far.
Not only do I have trouble falling asleep (getting comfortable) but then when I do wake up in the morning I am tired and I feel as if I have a ton of bricks inside my head. This isn't a new issue it has been a common refrain over the past years especially for anyone who reads this frequently!
Anyways I really think someone in the medical community ought to come up with a hand drill patients could use to drain their own fluid when our shunts are being imperfect and we have to wait for surgery for other reasons (holidays, family preferences (I don't think people have a clue how this feels), etc. I don't wish to be in-patient over the holidays either as I really enjoy all the traditions we have (baking/decorating cookies, shopping, making decorations w my nephew, decorating and wrapping the presents I find (I love wrapping presents), etc. Sunday School and our Christmas-Group Party, being with my fellow SS Teachers, and so much more. I do wish though there was a way to improve how I feel as I literally spend atleast 1/2 the day, sometimes much more than that feeling as if "I got run over be a reindeer".
Aaagghhh I HATE shunts-actually mores specifically as imperfect as they are I am grateful for shunts, I HATE hydrocephalus and MPS! This time has been so weird, so all over the place ie the symptoms are my classic bad in the morning, somewhat improve as the day goes on but then some days some of the other symptoms are worse and some days a little better.
I always feel crazy though, seriously when I see people later in the day and I feel "more fine" and I am sure I look pretty fine so they have no idea what a lot of the day is really like! Not to mention you keep on keeping on w the things you have going on but sometimes looking back it is like "holy s***, did I really make it through all that!?" - Not exaggerating on that!
Anyways, next week is Christmas, I am not in the hospital this year and I have all my gifts, bought, wrapped and tagged!
I love Christmas for it's true reason though, Our Savior's birth and being with Family!
Thanks for stopping by,
Merry Christmas!
Erica
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