"The truth is rarely pure and never simple" (Oscar Wilde). -- This blog reflects my personal life with but not defined by MPS I- reflecting the peaks and valleys of this dx., and my life despite a rare disease while rarely falling within the standard definition of this disorder.
Sunday, July 5, 2015
EP Study info
I know I updated last wk (I think?) about the EP Study/Ablation being rescheduled due to med miscommun. and rescheduled to the 22nd.
My EP dr. emailed me the day after the Study was cancelled (so the morning the study was originally scheduled to be done) both apologizing (which was nice albeit not necessary) and gave me the med instructions re: what and when to stop the various cardiac meds that I should have been told of ahead of this past wk's scheduled EP Study and Ablation.
I also heard from the Anesthesia dr. i'd originally hoped to use (she was out of town last wk., she had messaged me and let me know as much regarding being gone but that she'd also shared her anesthetic recommendations with my Team for the sedation for last wks. originally scheduled study) and she is working the 22nd. In her messages she said she should be able to be part of the Team on my case the 22nd which is good.
In addition to Dr.Taylor it will include Dr.Kovach (my EP), a 2nd EP dr, Dr.Taylor (Anesthesia) and the others involved in the case.
1 Wk ahead of the 22nd (when the study is rescheduled for) I am to stop the Diltiazem (Calcium Channel Blocker)
5 days ahead of the 22nd i'll stop the Digoxin
The morning of i'll skip both the Lasix and the Spironolactone morning doses
I'll keep taking both the Aspirin and Coumadin doses and this last time we tested INR 2 days prior but they do not want to stop either med for the study.
In the email Dr.K also included (which I did know from my Endocrine drs. office) that they received the pre-procedure stress dose steroid dosing recommendations. The recommendations for pre-surgery stress dose steroids to include the 100mcg pre-sedation IV Solu Cortef which is to be given 1hr ahead of time (I had always thought it could be given 30mins to 1hr but according to my dr they highly recommend it be given an hour ahead of time) and then i'll wean at home.
Otherwise breathing issues in this humid weather have been pretty fierce, thankfully it is not a constant but wowza when it is an issue, it is most definitely an issue and seems so much worse lately! I check INR again Weds, at CHW prior to my ERT (enzyme) infusion so may mention the change in symptoms to Jane, Dr.E's Nurse when she calls with results. I doubt anything we'd do but worth mentioning.
I am actually a little unsure if say the EP Study they find an arrhythmia and say it could be ablated (basically gotten rid off) could that help the CHF symptoms and thus the breathing symptoms?
I know he's said it is ok but I did email this question to Dr.Kovach. I am a little curious if say they don't find an arrhythmia and then we have to start the new Heart failure med but say we ended up still having to do a mitral valve replacement at some pt. (which Dr.E seems to really feel we'll have to do sooner than later, thus a 3 OHS) are pts. able to eventually get off of the Ivabradine once say MVR is done?
In any case will update when there's anything worth updating, this week I as I mentioned above I infuse on Weds. Not a lot else going on this, wk., impatiently trying to be patient waiting to get this different shunt valve so I could HOPEFULLY sleep a little better!?!?!
Otherwise it has been a busy wknd, Fri., my Mom, Sister, Z and I went to Sun Prairie and Madison to some crafty type stores and Greenhouse. Sat we had a cookout and bonfire while getting eaten alive at my Sister's. Earlier in the day Zan and I had went out to the Horicon Marsh which is only about 5-10mins from where my Sister lives. Zan wanted to come home with me and the fireworks didn't end up starting till around 10 so we left a but earlier but did see other fireworks on our drive back to my Apt (about 20min drive), this way we beat all the crazies to.
Sun my Parents had a cookout so we all went swimming and the kids played, and good food although is always even better when one is hungrier!? =) Definitely a busy and tiring wknd, especially given sleep has not been my good friend lately!
Thanks for stopping by,
Erica
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