Monday, June 23, 2014

Lots going on (but not all medical)

I meant to 'publish' this a few days ago but will add a quick note before doing so since I didn't.
INR for Cardiology (which checks clotting time for the mechanical heart valve) was within normal again, for the 2nd time in 2 weeks! This is remarkable for the fact it took us over 2 mo to get the level back to a normal (for Coumadin/Mech. heart valve) level!
Per Jane, in Cardiology they'd like to re-check the level in 2 wks (I thought maybe I'd get to go a month but I think if it stays in-range this next time they'll move to that) and dose stays the same (6mgs 5 days, 8mgs 2 days)

It has been a busy (but not to bad) few weeks.
The past few weeks for several days and nights each week I was staying at my Sister's (about 40mins drive)while she did her clinicals for Phlebotomy (lab draw) over a 3 wk period. The 1st wk I just had to then take my nephew to school in the mornings and the past 2 wks the days I was needed I watched him till he went to his Dad's.
This past week in addition to that several nights/days I also had VBS M, W-Th and ERT on Tues. Thurs night was closing service for VBS which was done in-service w/the Christian Contemporary band 'Koine'.
A really pretty service! I sat by several of my students and their families and they all looked so happy!
VBS ran in the afternoons last wk so it actually worked out pretty well, I also really liked the group of kids (22 total) I had. Although I really struggle with names I was able to with the use of name tents and a master list I wrote up of my students do a lot better w remembering each kids name this yr.
That said I still struggled a fair bit and many of the kids thought this was really funny + would randomly quiz me on their or others names. =)

Otherwise on a MPS front things have been fairly quiet, last weekend pretty much out of the blue I had fever, much worse headache and I ached to the point sitting or standing was uncomfortable.
I think the body aches was un-related to the other 2 and more b/c of having been on my feet most of Sat. Thankfully by Monday night I was starting to feel better and VBS still went fine.
Headaches otherwise have been hit and miss, the damp or rainy weather does seem to have some affect and otherwise I am not sure honestly why some is worse than others. For whatever reason weather changes is a fairly common complaint in Hydro pts although for me I would have to say it is really only an issue when I seem to be having some issue (small or otherwise) with 1 or both of the shunts.

From a Cardiology stand-pt the breathing issues con't on and off, for instance I've felt pretty well fine the past few days and then other days I just don't, breathing is almost a chore. I am definitely grateful when it is normal!!!!
Since waking up Sat I've had an uncomfortable feeling again, similar to a month or more ago when I was getting really uncomfortable stabbing like discomfort when I would breathe in.
It isn't at all with movement just with breathing in so I tend towards taking shallower breaths when this is occurring (on and off since Sat).
At the same time I was playing a bean bag toss type game w/family on Sat. and that neither made it worse (I throw L handed though and discomfort is R sided, seems near the TPL Shunt but may not be at all related) nor did I feel more sore on Sun from this so I don't think it is muscular.
When Jane, from Cardiology called she asked about the breathing issues to which I gave her the mild run down (really good days, and days where it seems really bad but weather seems to have 0 affect as it occurs at seeming random on both hot/humid days and on some of these chillier days).
HR still in the higher (for me) range and some of the random skipped or double beats but not always to bothersome.
She wanted to run all of the above by Dr.Earing and said she'd either call or email in the morning/after she was able to talk to him see if he had any thoughts.
Although the breathing issues are definitely bothersome when they occur I am also grateful the med changes we've made over the past few months (digoxin 250mcg's, Nadolol 80mgs, Spironolactone 25 x2/dy, Lasix 60mgs x 2/dy) have helped some!

The only thing occurring this week is full spine MRI's for Dr.Bragg and then she'll reset both the VP and TPL Shunts to the correct setting afterwards.
These are both for MPS sake due to spine issues that can commonly occur in MPS I pts.
I've had the c-spine decompression/fusion and then 2 other smaller un-planned lumbar and thoracic decompressions while Dr.Bragg was doing shunt surgeries so am not new to my spine having issues.
She was concerned for potential herniated discs in lumbar or I believe c-spine due to the very many surgeries I've had on both spine areas. I do have some spine symptoms but tend to think there probably isn't anything big going on. I am grateful Dr.Bragg gets this disorder though and tries to be proactive.
The MRIs are very, VERY early Weds morning and then I see her shortly after for re-programming of the 2 shunts.

Thanks for stopping by,
Will try to update again soon,

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