Tuesday, February 25, 2014

Cardiology updates

Jacket from the National MPS Society I had embroidered last year w purple ribbon and the other designs.

Not sure how I hit the enter button to publish this but I did so it wasn't really a completely finished entry (oh well I guess), I had planned to finish Thurs after a Neurosurgery Appt.
I guess i'll just do a separate entry then, maybe..
I don't think I wrote this last week but INR (blood thinner level) was back in range at 2.2 last Thurs when measured prior to ERT (infusion) and prior to the Cardiology Appt! So dose at this points remains at 6mgs 5 days a week and 8mgs 2 days a week. I re-test next Monday while at ERT again, which gives me 1 1/2 wks between INR testing for the first time since the last surgery 5 wks ago!

I talked to Cardiology today (Monday) per their wishes and expressed my mild frustration at the Nadolol and how I feel it makes me feel tired and not that great (apart from the headaches which have also been worse on/off.) Nancy, the NP's recommendation was to try taking the Nadolol in the morning as this is a long acting med and so their thought is the med side effects may not set in till later in the day after I am home and near to getting ready for bed anyways. Today this did seem to make a difference (the first day) though I will also say heart rate has still been humming along at a pretty great clip.
The NP I work w alongside my Cardiologist called me back yesterday as she typically does (she is who monitors INR and since the 2 OHS's has took the place of Dr.E's regular Nurse for pre-appt questioning, etc.). Per Dr.Earing they want to try going up on the Nadolol but recommended I try taking it in the morning as mentioned above to see if I then wouldn't feel more tired at night (which would be ok) since this is a long acting med anyways. Heart rate (HR) today (Monday) at ERT at initial vitals check and then an hour or so later was between 88-92 so no real difference yet at the 40mgs/day dose of new beta blocker. Dr.E would like the 80mgs (new dose) taken as a one time dose vs divided up in twice daily dosing, I guess bc it is the longer acting med. I am to call them on either Friday or Monday (actually in all honesty I can't remember why she said to call her Fri instead of Monday (was some reason) and if whatever that reason was didn't occur I otherwise was to let them know Monday how it is going. INR is re-drawn on Monday anyways while at ERT so makes sense unless some issue to just talk to them then once vs twice.
I can't remember for sure but I think she said they would consider adding something else or changing meds if HR hasn't come down enough (to the 60bpm range) so that was part of why I need to let them know HR either Fri or Monday along with any symptoms update.
One thing I will say is I think the Coumadin (for preventing blood clots in new heart valve) increases appetite so even though I don't feel great I still atleast have somewhat improved of an appetite so that is an ok thing I guess..

I've experienced a few extremely intermittent episodes of what I guess is dizzy spells over the past weeks - I think literally a couple in one day BUT both times that day AND today (mon) I was sitting down so it seems pretty unlikely it was BP related. Since then I haven't experienced anymore. Heart rate cont's to hum along (as mentioned above I know). Taking the Nadolol in the morning vs at night does seem to help some with the side effects though it doesn't seem to be having a real effect on overall bringing heart rate in to a slower range. I know this rate isn't that high compared to some but it is high enough that it is affecting heart rate function and concerning to Dr.Earing/bringing on the CHF symptoms again so i'll be glad when we get it down.
I guess that is it for now, will update other things after tomorrow apt or in next few days.
Thanks for stopping by,

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