Monday, March 10, 2014

Cardiology, TPL Shunt revision, Anesthesia

Per my Primary dr for surgery - (who is very familiar w the complex, pre-surgery requirements) she made a few suggestions (as she wasn't doing my pre-op) to include that the stress dose steroid dosing be confirmed, make sure the Coumadin dose (and how many days before) was taken care of/managed, and she had concerns about the Cardiology issues being stable/managed as well as to make sure I had Cardiologies approval to proceed with surgery. There may have been something else she messaged me about to make sure I brought up/made sure where taken care of but so far pre-op is taken care of, INR (blood thinner level) will be done next Monday (at ERT) or Tues right before my Cardiology Appt and then the following wk on Weds, 2 days before the TPL Shunt revision when I will also have the Port re-accessed by my Infusion Nurse (her main job is on the CHW Access Team).
I wasn't sure initially if this surgery would be pre-admit or day of (the last two have been admitted the day before) but I talked to Dr.Bragg's Nurse last wk who called and surgery will be admit the day of (hopefully first surgery) which even though means very early it is always much nicer than having to wait till the afternoon on no food and then frequently delays in getting to surgery. I suspect it may not be the 1st surgery though unless Dr.Bragg has surgery over at AFCH and wants to get any at UW done first. Is hard to say.
In reality I suspect the hardest part of this TPL Shunt revision will really be the anesthesia/anesthesiologists getting an airway and depending if Cardiology feels they need to do more intensive cardiac monitoring. Otherwise I don't think the actual surgery will be very long.
Dr.Bragg had asked that I get Cardiology's approval for surgery (mentioned in last post I think) and as well that Cardiology give their recommendation for when to stop Coumadin (actually that seems a little odd, I think Dr.Bragg's Team made this call the last 2 times but I might be wrong about that) but the INR pre-surgery check is set and when done the result will be faxed to Dr.Bragg. Cardiology if they need can make any last minute recommendations if the level is to high (I am not sure actually what day I am to stop the Coumadin that wk, I forgot to ask Nancy, the NP when she called today about this and something else). Have time though and will figure that out next wk, I think it is typically 3 days prior.
I do f/up with Nancy and Dr.Earing in ofc on Tues next week instead of Thurs this week (death in his family) so their plan is to do a repeat EKG at the appt and revisit meds as the increased Nadolol (went up to 120mgs last wk) didn't budge Heart rate (102 Fri, 104-108 at ERT today) so in the mean time Nancy dropped the dose back to 80mgs as it is at least a bit (slightly) more tolerable at 80mgs (I just altogether skipped the dose on a day like Sat where I had things going on all day). Their long term plan is still to try and get heart rate under 70 to try and give the heart more time to relax in-between each heart beat and hopefully buy time to needing to replace the mitral valve (thus a second mechanical valve, higher blood thinner level and more complicated pre/post- (any)surgery blood thinner management).

I fly to MN to see specialists at UofMn next week Weds-Fri, with all appts on Thurs and their Neurosurgeon will reset both shunts after the fMRI is done. This study follows the long term cognitive (longitudinal) function in individuals w MPS I through cognitive (neuropsych) testing and the fMRI. There is apparently 1 or 2 other things they have added on this time. Due to all the shunt issues I've not actually been there in over 3 yrs but this study really is a year to year follow up. Not exactly loads of fun but on a side note and a way to make it seem a little more bearable I am meeting up w a good friend of mine from Genzyme (saw her in San Diego actually, too) for dinner Thurs night or Fri morning depending when both our schedules work best. I am looking fwd to that part.
I am sure it may seem like why do something like this? But in our rare disease world there are soooo few pts and so few treatment options (Enzyme is it and that does nothing for neurologic and many other issues) so by participating in this kind of studies the Researchers can get a little better idea of how to help us attenuated individuals and really maybe even get better ideas how to help us Attenuated, OLDER Adults!?
The above is the precise reason why I work for Gene Spotlight, b/c I can help make in a small way research happen a little faster by helping find adults or individuals and helping get individuals involved in research studies when they are or become available. By helping collect data so that when we do get to a point of having more research studies to participate in the patient data is more readily available to enroll pts faster, being able to access research study info more easily, patient info (who have agreed to share their info) more easily, in one spot and many other reasons that before my work w GS where lacking as a resource!
A lot of what I do is connect patient A (patients) to point B (studies, researchers, Gene Spotlight or whoever needs patient info when the patients or families are amenable to being involved per whatever GS needs or ask me to work on. BR>
So on yet another un-related note =) I am another day older, another day wiser (maybe!?) =) as it was my b-day last Weds. This past Sat after spending the afternoon with my Mom, Sister and nephew shopping I went bowling with a group of friends for mine and another good friends b-day which was a lot of fun. Made for a early morning what with losing an hour of sleep and getting up for Sunday School though!
On another un-related and older note (2 wknds ago) Zander, my 7 yr old nephew was with me most of last weekend and we had been playing on the floor together close to each other. Whenever my HR is fast it is also very loud (due to the mechanical valve).. Zan sitting close to me stops suddenly, looks over to me and without missing a beat says "Your heart is REALLY loud!" That cracked me up as I don't think I've ever had another adult or kid just know what the sound was coming from and yet Zan with high functioning autism figured out quite quickly what the sound was! =)

Tomorrow (Tues) is Neuro Opthalmology f/up (1 year) which I think the only issues may be perhaps glasses needing stronger (but actually not really certain on this) and sometimes it does seem like peripheral (side) vision is worse which is an issue they and others have been following for some years. We'll see what the appt brings!...

After Sunday School and Church one of my fellow SS Teachers (who was also bowling w us Sat night) and I went out for lunch which has become a semi-common place thing for us as we'll often go to Church together after SS and then if neither of us has kids (her grandkids, me w/Zander) we'll go out for lunch together. Tonight, after getting home from ERT and a few stops on the way home I finally made it to a Ladies Aid mtng at Church which was nice. Just another thing to be involved in, fellow Women (older than myself but some are friends of mine, others I don't yet really know) who are involved in different aspects of the Congregation. My fellow SS C-Teacher and another friend who is on the Church Committee I am on with me had been telling me I should come for months so I finaly got back in time and had some energy left (amazingly) so I decided to go once. It was nice. :) I am not the most out-going person and honestly don't mind being by myself, doing my own thing but this and Book Club are nice, something for a couple times a month or when there is something going on that the group needs help with.
In any case, i'll update either after the Neuro-Opthalmology Appt or next week after the Cardiology Appt.

Thanks for stopping by,


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