Wednesday, November 27, 2013

A range of things, Happy Thanksgiving!

I had Labs today for Cardiology due to the CoQ10 addition and Jane, Dr.E's Nurse called with the results. The INR was to low at 1.75 whereas goal range is 2.5-3.5, they will re-check this and other labs next Thurs., a week from now prior to Cardiology Appt fup.

The Pre-Op Appt for Dr.Bragg's surgery with PCP is set for early Jan., with her (PCP) plan being to contact Cardiology and get their 'ok' on her pre-surgery bridging plan. From what my PCP shared her plan is to bridge with lovenox injections for 3-5 days prior to the shunt/spine surgery + stop the Coumadin during that time and nothing the day of surgery. Lovenox/Coumadin are then re-started at Dr.Bragg's discretion the day of or following surgery and monitored daily till labs are back in range.

I talked to Dr.Bragg's Nurse today and she (Dr.Bragg) hadn't decided on a valve yet for the surgery which after Lisa said it didn't surprise me to much. I said to Lisa, often she (Bragg) will come in to pre-op the morning of surgery and talk about how she was still thinking over what she was going to do or change the night before my surgeries and what she finally decided on. Sometimes Dr.Bragg wouldn't have decided until she was in surgery and then make a decision. She knows her stuff so I trust any decisions she makes. I do like information ahead of time, it helps me deal with things but I also know taking her time and thinking things over is Dr.Bragg's style so it is fine not knowing.

Next week is another week of pure craziness, I am not entirely sure when i'll get Cardiac Rehab in (usually Mon, Weds, Fri and I almost always already miss Mon's due to ERT) but maybe they will let me come to an earlier or later class on Thurs as I will be in Madison Weds. (seeing the new physical med rehab dr., does the spine-muscle botox) and Thurs see Cardiology. On Monday I am going in to CR after infusion to their 2:30 class whereas I normally on Weds/Thurs am in the 1:00 class so maybe will do the same or earlier 11:00 class Thurs. I will never get done with CR at this rate as there is always some other Appt conflicting w the Cardiac Rehab times! Anyways, Monday is ERT (infusion), Tues is Endocrine, then meeting a friend for lunch, Weds the PMR Appt in Madison and Thurs is Cardiology. Hopefully all this will calm down soon, right now seems like a lot bc of Cardiac Rehab and 3 and 6 mo fups w several drs. - Is CRaZy!

Anyways, I guess that's all that is new on the MPS/medical front. Thanks for stopping by - Happy Thanksgiving!

Erica

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