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
Thursday, December 19, 2013
Thursday, December 5, 2013
Endocrine, PMR (Physical Med Rehab-Botox), Cardiology
Cardiology
The Cardiology Appt went well with nothing to big coming up (didn't really expect anything to) just a few adjustments and otherwise all current cardiac meds (Lasix, spironolactone, beta blocker) will stay the same as "you look good and are doing pretty good so I don't want to upset the apple cart right now" I believe where Dr.E's words.
Overall Heart function is at the low end of normal so they want to keep the heart rate lower than it is with Dr.Earing doubling the current beta blocker (bisoprolol, which is used commonly for CHF, BP and less commonly for rhythm) dose. If heart rate with this increase where to last longer than 10min and especially 20min stretches at a time in the 80', 90's or higher he (Cardiol.) mentioned he would probably go to a different, stronger class of meds. His reasoning for this is that he wants there to be more time in-between each heart beat for filling and relaxing (blood, oxygen I think they explained) so the heart isn't working so hard so often. His explanation for why this is was both it was an issue prior to the heart surgeries, the MPS likely factors in and the heart surgery can often cause short term damage which needs to re-wire itself. If it where to change or worsen he would add the different med class and do an EKG + have me come in sooner (I cant imagine it will) but otherwise I see them for an Echo and Fup in 3 mo. and keep them updated in-between. They also call with each INR/lab work result so while we don't see each other we also don't escape each other.
Otherwise INR was in the high-normal range so this will be re-checked the 1st week of the new year (around New Years) and their hope is it will trend down between now and then as they'd like it to really be in the 2-ish range (2.5-3.5 is ideal range). When we do have to stop the Coumadin (see below) a few days before the shunt/spine surgery in mid-Jan., if the INR level is closer to the 2's there wouldn't be as far for the range to have to fall when I would go off of Coumadin leading up to surgery and wouldn't be as much bleeding during surgery then I think. The higher the INR before I stop the Coumadin the farther it has to fall and the less likely it is to be very low leading in to surgery meaning bleeding would be worse during I guess. (did that all just sound as confusing as I think it does? No matter how many times I re-type it, it doesn't come out sounding any clearer/better!)
Because I have a newer tri-leaflet valve and no other risk factors (previous clots, a 2nd mechanical valve) I won't have to bridge with Lovenox injections apparently before this up-coming surgery (per newer ACC recommendations) which is a nice thing! Dr.Simpson my PCP had been planning on doing the lovenox (is newer recomm's) so I passed that information along to both my PCP and to Dr.Bragg. I won't complain!
Endocrine, Physical Med Rehab (Botox)
The other 2 appts besides Cardiac Rehab where Endocrine on Tues., which those labs take a few days to come back (cortisol, thyroid, other hormone levels, etc.
Yesterday I saw the new Physical Med-Rehab dr that Dr.Bragg and especially her Nurse had recommended. Dr.Caldera is also at UW and i'll see her using my secondary insurance but she agreed that cont'ing with the botox was warranted and she would con't with the areas I previously had done + may recommend doing further botox in other areas but would like to review the previous notes further.
She seemed to have a good idea of my past shunt surgery history and was aware of the heart surgeries as the reason why I had previously had to reschedule seeing her and somewhat aware of MPS affects. Because of the holidays and other things going on we opted to wait till the end of Jan to do the next round of botox injections since it was last done in June (so just a few months outside the normal 3 mo pattern I typically do). She commented if I felt it needed to be done sooner to please let her know and she would make it happen which she seems to not mind working with other providers if need be and interested in the overall picture.
The other (much sadder) news this week has been on Sunday my Dad and I went and visited my Grandpa and he was doing really well (well for Grandpa and how he has been up and down over the past 2 or so years). but then Monday he had went drastically down hill. By Tues night most of us family where at the Assisted Living home to say good bye, later Tues night Grandpa passed away.
I am both sad about losing someone who meant so much to me growing up but also I know he is in such a better place, free of the earthly pains and restored to a full and glorious body. I can't argue with that so while our earthly sorrow is great, Grandpa's heavenly gain is soooo much better!
The funeral services are Monday night, i'll likely drive up there from ERT (infusion) in Milw. One of my closest friends (from sun school, we both teach) texted me to ask for arrangement information as although she has never met my Grandpa or most of my family other than my Dad she wants to try and come to the services to offer support. I know she has to work all day so just knowing she cares means more than I can even say! I am very grateful to have such friends as she!!
On a completely different note, Sunday I am going with Church to the Seminary where there is a Christmas Concert being put on. My other Sun School Teacher (who I teach with) and I are riding together (bus) and should be nice, afterwards (or maybe it is before I am not entirely sure) the group stops to eat. I love Christmas music and especially Christian Christmas music so am looking fwd to this.
I know it may seem odd to jump from talking about the loss of my Grandpa but I feel like with the knowledge of knowing he had God's grace and forgiveness I truly do believe he is restored to a heavenly home, one in which all who believe will one day also gain and so much better than anything we could have here on earth!
God's blessings, remember in everything God does have a reason,
Thanks for stopping by,
Erica
The Cardiology Appt went well with nothing to big coming up (didn't really expect anything to) just a few adjustments and otherwise all current cardiac meds (Lasix, spironolactone, beta blocker) will stay the same as "you look good and are doing pretty good so I don't want to upset the apple cart right now" I believe where Dr.E's words.
Overall Heart function is at the low end of normal so they want to keep the heart rate lower than it is with Dr.Earing doubling the current beta blocker (bisoprolol, which is used commonly for CHF, BP and less commonly for rhythm) dose. If heart rate with this increase where to last longer than 10min and especially 20min stretches at a time in the 80', 90's or higher he (Cardiol.) mentioned he would probably go to a different, stronger class of meds. His reasoning for this is that he wants there to be more time in-between each heart beat for filling and relaxing (blood, oxygen I think they explained) so the heart isn't working so hard so often. His explanation for why this is was both it was an issue prior to the heart surgeries, the MPS likely factors in and the heart surgery can often cause short term damage which needs to re-wire itself. If it where to change or worsen he would add the different med class and do an EKG + have me come in sooner (I cant imagine it will) but otherwise I see them for an Echo and Fup in 3 mo. and keep them updated in-between. They also call with each INR/lab work result so while we don't see each other we also don't escape each other.
Otherwise INR was in the high-normal range so this will be re-checked the 1st week of the new year (around New Years) and their hope is it will trend down between now and then as they'd like it to really be in the 2-ish range (2.5-3.5 is ideal range). When we do have to stop the Coumadin (see below) a few days before the shunt/spine surgery in mid-Jan., if the INR level is closer to the 2's there wouldn't be as far for the range to have to fall when I would go off of Coumadin leading up to surgery and wouldn't be as much bleeding during surgery then I think. The higher the INR before I stop the Coumadin the farther it has to fall and the less likely it is to be very low leading in to surgery meaning bleeding would be worse during I guess. (did that all just sound as confusing as I think it does? No matter how many times I re-type it, it doesn't come out sounding any clearer/better!)
Because I have a newer tri-leaflet valve and no other risk factors (previous clots, a 2nd mechanical valve) I won't have to bridge with Lovenox injections apparently before this up-coming surgery (per newer ACC recommendations) which is a nice thing! Dr.Simpson my PCP had been planning on doing the lovenox (is newer recomm's) so I passed that information along to both my PCP and to Dr.Bragg. I won't complain!
Endocrine, Physical Med Rehab (Botox)
The other 2 appts besides Cardiac Rehab where Endocrine on Tues., which those labs take a few days to come back (cortisol, thyroid, other hormone levels, etc.
Yesterday I saw the new Physical Med-Rehab dr that Dr.Bragg and especially her Nurse had recommended. Dr.Caldera is also at UW and i'll see her using my secondary insurance but she agreed that cont'ing with the botox was warranted and she would con't with the areas I previously had done + may recommend doing further botox in other areas but would like to review the previous notes further.
She seemed to have a good idea of my past shunt surgery history and was aware of the heart surgeries as the reason why I had previously had to reschedule seeing her and somewhat aware of MPS affects. Because of the holidays and other things going on we opted to wait till the end of Jan to do the next round of botox injections since it was last done in June (so just a few months outside the normal 3 mo pattern I typically do). She commented if I felt it needed to be done sooner to please let her know and she would make it happen which she seems to not mind working with other providers if need be and interested in the overall picture.
The other (much sadder) news this week has been on Sunday my Dad and I went and visited my Grandpa and he was doing really well (well for Grandpa and how he has been up and down over the past 2 or so years). but then Monday he had went drastically down hill. By Tues night most of us family where at the Assisted Living home to say good bye, later Tues night Grandpa passed away.
I am both sad about losing someone who meant so much to me growing up but also I know he is in such a better place, free of the earthly pains and restored to a full and glorious body. I can't argue with that so while our earthly sorrow is great, Grandpa's heavenly gain is soooo much better!
The funeral services are Monday night, i'll likely drive up there from ERT (infusion) in Milw. One of my closest friends (from sun school, we both teach) texted me to ask for arrangement information as although she has never met my Grandpa or most of my family other than my Dad she wants to try and come to the services to offer support. I know she has to work all day so just knowing she cares means more than I can even say! I am very grateful to have such friends as she!!
On a completely different note, Sunday I am going with Church to the Seminary where there is a Christmas Concert being put on. My other Sun School Teacher (who I teach with) and I are riding together (bus) and should be nice, afterwards (or maybe it is before I am not entirely sure) the group stops to eat. I love Christmas music and especially Christian Christmas music so am looking fwd to this.
I know it may seem odd to jump from talking about the loss of my Grandpa but I feel like with the knowledge of knowing he had God's grace and forgiveness I truly do believe he is restored to a heavenly home, one in which all who believe will one day also gain and so much better than anything we could have here on earth!
God's blessings, remember in everything God does have a reason,
Thanks for stopping by,
Erica
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