Friday, November 24, 2017

Happy Thanksgiving...Restarting (oral) blood thinner, various

  A bit late but Happy Thanksgiving! I will admit I've struggled a bit this holiday season to get excited for the Holidays (I am looking fwd to some parts just struggling with other things) but no less I am grateful for all I have and all who are part of my life.

Things con't to go pretty well with the headaches - I honestly think this is 1 of the longest periods I've had in a long while (perhaps some yrs) where I've not had pretty bad headaches. I am so so glad Dr.Bragg has stayed part of my care and my life and that she con't to work with Dr.Iskandar (my Neurosurgeon since she moved, her former Partner) - together they have made a difference especially this last surgery though really I think this relief is almost an unintended benefit of surgery (no doubt moving the shunt catheter helped significantly, that radiating pain is 90% better and only occurs now on much rare occasion and to a much lesser degree).
Best perhaps of all (though don't get me wrong that relief is fantastic to!) but the CSF (spinal fluid) leak that occurred after this last surgery which continues to a small (or varying really) degree is what truly relieves my headaches. The 2 shunts alone make a significant difference in my headaches but I rarely feel truly great. With the additional CSF leak it is truly like a whole different situation and WONDERFUL!!!!

Heart rate wise, oh this heart rate of mine. I swear between the shunts and Heart which could drive a person nuttier!? I suppose that depends on the day! The Amiodarone which I've been on for I want to say about  a month now but I honestly can't remember has been going okay but doesn't seem to be working any to well. Some times heart rhythm and rate seem okay then other times it's just pure nuttiness and I am in now way being dramatic about this. I mean literally excess-long runs of skipped/extra beats (PVCs or whatever, has been different than even my normal, not normal) beats. so less than awesome.
I know Dr.Earing (Cardiology) is/was concerned about these and if the Amiodarone doesn't work there not being another option (other than going back to Cath lab to re-look at heart and rhythm more closely but I know Dr.Kovach is really reluctant to do that b/c of the 2 heart valves and (if I remember right) this rhythm is coming from an area where the new mechanical heart valves are or it may have been that this area + scar tissue would complicate any procedure. I can't remember for sure just that he is less than enthused to go that route. I completely get that! Hopefully Dr.Kovach has some idea or we could figure something out.
These rhythms are downright exhausting not to mention secondary symptoms it causes. Can only pray - pray for God to give my Providers guidance and for myself con't to ride it all out! God is good so as frustrating as it all can be (and oh it is at times I'd be lying if I said otherwise) I know ultimately 1 step at a time... AND will enjoy this shunt-headache relief however long it decides it is going to be good! Atleast 1 issue is being nice!!!!

                                                           Re-starting  Coumadin
I restarted the Coumadin today (oral blood thinner) and per Cardiology test INR (lab test to measure how thin blood is) Tues at Infusion (I LOVE that my PCP works with my Cardiology Team and will order the test for them + has said she'll be sure the result gets faxed to them). So i'll be able to have this drawn right at infusion similar to how I used to at CHW/FMLH. As in the past although Dr.Simpson will fax Cardiology the results they've asked I call and let them know so they can call back the same day or soon after with any changes they may want to make or when to test again. Due to our issues with this in the past and the concern of the TIA (mini stroke) that occurred a few months back + Cardiology wanting to prevent that recurring as much as possible (or atleast minimize risk from heart-blood clot risk). Never to dull but should be ok and thankfully my Team is all working together! I also have to say the 'Care Everywhere' system which allows my Providers at 1 health site to access records for Providers at another site is really, really nice!
Thanks for stopping by,

Erica
  A bit late but Happy Thanksgiving! I will admit I've struggled a bit this holiday season to get excited for the Holidays (I am looking fwd to some parts just struggling with other things) but no less I am grateful for all I have and all who are part of my life.

Things con't to go pretty well with the headaches - I honestly think this is 1 of the longest periods I've had in a long while (perhaps some yrs) where I've not had pretty bad headaches. I am so so glad Dr.Bragg has stayed part of my care and my life and that she con't to work with Dr.Iskandar (my Neurosurgeon since she moved, her former Partner) - together they have made a difference especially this last surgery though really I think this relief is almost an unintended benefit of surgery (no doubt moving the shunt catheter helped significantly, that radiating pain is 90% better and only occurs now on much rare occasion and to a much lesser degree).
Best perhaps of all (though don't get me wrong that relief is fantastic to!) But the CSF (spinal fluid) leak that occurred after this last surgery which continues to a small (or varying really) degree is what truly relieves my headaches. The 2 shunts alone make a significant difference in my headaches but I rarely feel truly great. With the additional CSF leak it is truly like a whole different situation and WONDERFUL!!!!

Heart rate wise oh this heart rate of mine. I swear between the shunts and Heart which could drive a person nuttier!? I suppose that depends on the day! The Amiodarone which