Monday, May 1, 2017

Whatever will be, will be..? Heart, Shunts/Back, etc..

I know my God is a gracious God and a loving God and I know it is the Devil that causes me to doubt and worry but I have really, really had to remind myself this this past week and have reminded myself repeatedly it is ok to ask God for help with the many things I feel like I am struggling with.

Between the headache/shunt stuff which has been pretty bad and very little of each day that I don't feel just worn out (tired) and pressure (certain parts of the day are better but it still leaves me feeling exhausted due to not very good sleep even despite sleeping in my recliner) and then the low back to mid-back pain that is so very unpleasant and uncomfortable and disheartening really (b/c I feel like there's no hope in sight) has been  a kind of unpleasant few wks piled on top of not all that fantastic few months.

Cardiology/Heart Rhythm Appts:
Heart stuff while heart rate has been better (more often in 80s-90s vs before Jan's 2nd heart ablation was most often in the high 90s-100s which is a good thing!) but for whatever reason I've been having a increasing amount of PVCs (basically extra or double beats) which at 1st was more of an annoyance than anything but as it's continued to build in frequency and occur far more often is causing other symptoms (because you know any 1 thing never ends!?! Not to play woe is me, just is kind of true). We trialed a beta blocker along with the other heart meds I take which didn't have much of any effect so after this last heart monitor our next step is likely to try a Calcium Channel blocker.
I follow up with my Heart Team (Cardiologist and Heart Rhythm dr.) Thurs, later this wk.

Infusion Site Change - Dean, FH Site:
I have just 2 infusions left at Froedtert then will move to the Dean-Fish Hatchery clinic site which is where my Insurer and Team have been working the past month or so to set up my infusions (an in-network site, while I don't wish to change where I go I do get that the cost savings will be substantial for how much the Aldurazyme (enzyme) costs my insurer and thus that in turn impacts what insurance premiums and costs are to everyone.  This site is where my Primary dr is and although I don't think she'll be actively involved in infusion she'll be on site (bldng) where anything to happen I guess. She'll be off for maternity leave from July for about 3mo I think she said but imagine there shouldn't be any issues anyways.
The perhaps true irony of this change though is our insurance (through my Dad) may change anyways come July 1 as the school district is looking at another option pending if DHP comes back with a comparable/better offer than what the school district has received.
I am stressed enough about several things so really praying the insurance stays the same as losing my Case Manager at Dean (she's been great) and the Med Directors who are familiar with my case would really suck actually. Sure there are things that at times annoy me about Dean but isn't that so with just about anything in life?

I also don't know if I'd take my Dad's new insur., then or not if it did change or just switch to using my secondary insur. as primary. At the moment my Genzyme Case Manager and I are looking at all possibilities. My Dean CM has said she'd help with the transition if it does change which is sweet on her behalf as clearly she wouldn't have to. I am just praying it doesn't have to change and Dean comes back with an offer. I know they did last yr., so while I am worried I am trying to be hopeful. Ugh!!

Last wk I saw Audiology (Hearing) which went back down some so back to hearing aids. I don't really need them for quiet situations is more when in noisy areas/a lot going on (which is often enough) hearing aids can help that. I had these yrs ago and admittedly didn't love them but did use them at times. My insur. does apparently surprisingly cover them so my Audiologist is working on whatever that entails.

Otherwise just ALOT of stress re my nephew and family stuff. Holy crap!!!!! I just have been really, really trying to lean on my faith as this past wk has really been hard. I miss that kid! I LOVE all of my nieces and nephews but Z admittedly is just a little closer than all, probably b/c I've watched him since he was a baby and spend significant amounts of time with him over the years. =/ I am so praying whatever happens he really will remain part of my and my Parents life. God has a plan right?

Will try to update after the 2 Cardiology/Heart Rhythm Appts later in the wk.
Thanks for stopping by,


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