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
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