Wednesday, September 3, 2014

A year ago..

Believe it or not exactly a year ago at this time I was still in surgery for the 2nd (repeat) OHS (Mech. AVR, Konno, VSD re-do) - hard to believe actually! I see Cardiology in a couple wks for f/up Echo (generally done every 6mo) and hopefully the mitral valve will not have progressed since the new changes where found (mitral valve) in Febr.
I never did get off any of the cardiac meds I was on prior to the 2 OHS and in fact doses where increased + another med added due to heart rate being high and concerns with the mitral valve changes. I'll be happy if the valve is stable though and no changes!
Otherwise in the year since the 2 OHS I've had approximately 5 or 6 other surgeries for the shunts both to replace the TPL Shunt back in to the Pleural Space, to close open incisions (VPS) and to shorten the TPL Shunt catheter. It's sort of been a wild year but then again haven't all recent years!? =)
I talked to Dr.Bragg's Nurse for quite a while earlier about both my Pain Mngmt dr not necessarily agreeing with Dr.Bragg's plan/thought regarding the Lumbar/low back and L leg symptoms + as well about the headaches seeming to increase in frequency/length and vision being such an issue with reading (=/) though the intensity thankfully isn't a lot worse.
Regarding the headaches she gave me the option to see Dr.Bragg tmrw but for several reasons (including so I can talk to my PM dr a bit before the appt next wk) I took next wks appt instead. Dr.Bragg's other appt day is Monday's but given my Infusion even she commented right away that wouldn't work (LOL, clearly I've seen these guys to much). Her Nurse was also going to fax their most recent clinic visit notes and MRI results to Dr.B and asked that I have Dr.B include them in her dictated office notes in the future so they can know what Dr.B is thinking.
Hopefully Dr.Bragg might have had a chance to talk to her Research Coord. and hopefully we can figure out a solution or plan for the low back symptoms be it injections (I am leery of them though not for it being painful but at the same time I guess I can't see why it might not help us figure out if the area Dr.Bragg is concerned may be the culprit is in fact the culprit..) or whatever.
I also hope we can figure out some plan for these headaches, originally we had planned to wait to deal with these till after we dealt with the low back symptoms but I am not sure we're going to figure out a solution to these symptoms any time quick? Guess we'll see..

Otherwise Sunday School starts up again this weekend; this will be my 3rd year teaching which also seems a little hard to believe. The one bad thing about this is it's early-ish in the morning which means getting up even earlier to give the headaches time to improve (=/) and I am not one of those people who can fall asleep early or easily!
I also have a plane ticket bought (the Foundation I work for reimburses) and hotel reserved for the upcoming 'Mini-World' Lysosomal Mntng in Minneapolis-St.Paul (next to Mall of America). That mtng is towards the end of Sept. should be interesting and if nothing else is nice to see friends from Genzyme there and some of the Med Providers I know (gives a chance to talk to them in person).
Thanks for stopping by,
Erica <

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