Wednesday, July 1, 2015

Plans change, change plans. It is hard not feeling good, Wishing I felt better.

EP Study was cancelled and rescheduled from tmrw (7/1) to 7/22 due miscommunication regarding meds. As disappointed as I was about this, for various reasons I initially was thinking this was atleast only 2 wks away but nope, it is 3wks from now. 3 effing weeks from now. This means at minimum I am sure another most likely 6 wks of these damn headaches which I am beyond tired and sick of and frustrated with. We can't do anything with the shunt until the EP Study is done as Dr.Bragg would like an 'all clear' basically from my Cardiology Team that they feel shunt surgery is safe.
I sort of understand this from her perspective but not entirely given 2yrs ago leading up to those 2 OHS for the aortic valve replacement/Konno procedure we did no less than 3 shunt revisions during the period we knew we where going to have to do the valve replacement. Perhaps i'll call and talk to my Cardiology Team this wk, see what they say although I still have this doubt Dr.Bragg would schedule anything till after the EP Study was done. - I feel like I am in a never ending cycle with these headaches and heart stuff and although, yes I realize it is whining and not right of me to ask I just want to ask God why? Why me? Why can't I feel better for a while, I mean really better w no headaches/pressure, no intermittent stiffness (the newest thing w the LP Shunt) and no cardiac issues/breathing issues which can get particularly bad in this humid/stuffy weather....
I understand her wanting to be safe but it just isn't easy when 1/2 the day is pretty much miserable. =/
Most of all I guess, again understanding it's not fair of me to question but why do things always seem to have to get put off/rescheduled/cancelled or something on one end causes another thing to be delayed? =/ I feel really, really frustrated and a little angry tonight.
Regarding why the Study/procedure was cancelled My EP Team and Cardiology Team had advised to stay on the Coumadin (INR was 1.88 Monday so not to bad) and had gotten instructions from my Neuro-Endocrine dr. regarding stress dose steroid dosing but apparently lines where crossed as far as my EP dr. thought I'd been made aware to stop certain meds. Per the Pre-op Nurse today I was to have stopped the Digoxin and the Cardizem and I would not take the Lasix nor the Spironolactone (water pills) the morning of the study but I was never told not to take these and unaware till the pre-op Nurse called today. =/
When the pre-op Nurse called she was going over everything, asking when I'd last taken various doses and I could tell felt really bad about this. Then Dr.Kovach's Scheduler called back tonight to give me the new study date and I hadn't yet been told this was for sure cancelled to which she couldn't apologize enough. She said after we had things squared away and after I'd explained I really was probably most upset b/c this delay meant a further delay in Dr.Bragg being able to do a shunt valve revision due to (Dr.Bragg) wanting my Cardiology Team to give their "blessing" re a revision. =/ So frustrating!!!
Needless on the medical front it was NOT an awesome day between this shunt business and finding out I'd have to wait and then finding out I'd have to wait even longer still b/c the EP Study miscommunication and reschedule. NOT Awesome at all. =/
I really appreciate my entire Medical Team but I really wish people in the medical field understood how bad we pts. feel and what it means when things get cancelled when we, the pts. are symptomatic (and for that matter dealing with multiple issues)! - Could have pounded a fist in the wall honestly, I get it miscommunication happens but for real, does it always have to be with me??? The thought of likely 6 or more wks with these damn headaches AND THEN given we're going to the mini nav .5 fixed pressure valve likely even worse spine nerve irritation just makes me sad. Not even mad about all of this, it just makes me sad knowing it's not going to be feeling good any time soon b/c 1 thing is going to affect another is going to affect another. Why, just why God can't we have simple and why can't we go back to 2 shunts w less spine-nerve irritation?
I rarely ever am in tears and is tears of frustration when I do over medical stuff but right now I am in tears over all this b/c I just don't understand why it all always has to be so hard and can't just something be simpler and go according to plan and my body play nice?
Tomorrow is a new day, thankfully, b/c I can't do anymore of this day and perhaps sleep as shabby as that is every night will help things be a little better perspective wise.
Thanks for stopping by, sorry to be so whiny. Believe me I am still grateful for my Team and for having access to the care I do it just doesn't always make uncertainty and feeling bad and seemingly (feels like) endless changing plans any easier.

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