Monday, February 1, 2016

Echo result (new MV gradient), weird!? Otherwise doing well (10ish days post)!

Things are going ok, pretty well I think - so amazed and HAPPY, it's been about 10days since the 3rd OHS and have been out and about some with my Mom, Sister and nephew/niece shopping. I sat in the van at a few stores and sat up front at 1 or 2 when done but others (Gordman's, Target for instance) walked around slowly and Z and I had some fun while doing so.
All the incisions look pretty good, the chest tube sites ooze some with a clearish fluid and very mild blood but there to not bad.
INR was checked this morn (prior to ERT), Cardiology called w INR result and 1.99, I'm not complaining but apparently even this they won't bridge (heparin/lovenox injections) and instead just increased my dose by 1mg to 7mgs every day vs 6mgs and 7mgs alternating.
 I'll check again next wk and if needed dose will be adjusted again to get it to the 2-3 range, their goal being closer to 3 atleast.
My Team seems to expect INR TO fluctuate quite a bit (bc of surgery, antibiotics and since being on Coumadin the past 2.5yrs my INR (blood thinner level) has been like a rollercoaster, for many reasons) so if needed they'll keep adjusting the dose as we need. Thankfully the only time we should have to go bigger (injections) is if INR where below 2.0 (not sure how low since 1.99 today!). - my range is now 2.5-3.5 but we have a little room they think (though may depend). We'll figure it out in time. 
Last wk when my Cardiology Team rounded they mentioned the Echo result, done the day prior and the NP mentioned something with a grade teacher being off. I wasn't entirely sure what she meant but she just said no one knew what it would mean + my Cardiologist didn't mention it when I saw him a few min later. 
I just was reviewing the many (MANY) test results received a on MyChart and  the Echo shoes the new mitral valve gradient is 7mmhg. Pet what limited I know, given we did surgery at 12mmhg gradient that puts the new valve at a mild/moderate stenosis? Maybe my Cardiologist thinks it will decrease, not sure but definitely going to ask next wk. Sure as hell better not get worse! Ugh! I am not worrying about it but needed to vent here a min.  <- Weird! I am definitely curious what this means long term.  I do think their having removed several med (digoxin, Ivabradine) and lowered a couple other doses (Lasix dose namely) + only adding a small beta blocker dose seems like a good sign? Again nit stressing just need to think about it some.
  Anesthesia and intubation after this 3rd OHS they left intubation for 2days, sedated if I remember right was slowly weaned over the next day. I apparently had some funny conversations during all thus - yeesh, lol! Perhaps a little like (as I was being sedated for this OHS) I apparently asked my Anesthesia Team I'd they could take pics of the OR. So weird on my part!
So far the cough has held on, worse sometimes than others. Sometimes can hear it as I breathe normal, weird but like a fuzzy/hacky sound and with breathing I don't know just a weird sound.
I see the Ortho dr. for my big toe/foot bone on Thurs. It has continued to remain pretty bruised and swollen but doesn't hurt to much. I have the foot boot which goes midway to knee
which hopefully comes off soon. I hate wearing it and don't at home but it does help it feel more comfortable when walking.
 As far as Cardiac Rehab, my Cardiologist  wants to wait to start Cardiac Rehab until this is healed (have a big boot to wear when out and about, I do not wear it at home). - as he said "You are the only person I know who could break a bone before a big surgery like this" ;) Takes effort (lol klumsiness)! Thankfully when I tripped, yet again today going up the stairs nothing hurt!
Hopefully the toe will be healed this wk or very soon!
I was laying on the couch last night, trying to fall asleep (easier to sleep on couch than in my bed/a bed) and although I can't say why I was thinking about this or even that it's the 1st time I've thought about it but how most people's normal is stars and stripes different than my 'normal'.  - We all function in the same world but my normal is so not a usual normal. I was thinking about how a 'normal' day for me is a lot of calls, scheduling/rescheduling appts, other mtngs and paperwork. How my normal is to get up and then once up for a while I begin to feel more normal. It's not at all unusual for me to have 2-4 appts a week, between ERT (Infusion), appt/Fup with one dr or another of mine who are all at minimum an hour away but then bc this is so normal for me it's also not unusual on better days to stop a place or 2, for groceries or pick up crafts for my SS kids or sometimes just bc I want to. I hate asking my Providers for help but it's not at all unusual to email/MyChart or other means with some of my Providers vs having to go in for an appt or to see what they feel re an issue. I don't know, no real reason for sharing this just lots of interesting thoughts when I think about my life vs many.
Went to ERT today in Milwaukee (Froedtert) which was fine - nice to be driving again!
I guess last but  NOT least going to sign this off by saying I've talked to my new Genzyme running team partner some. She us a former rare disease researcher and lives in AL I want to say offhand (down south) + her own daughter has a rare disease  (CCHS) so kind if cool! We'll meet for the 1st time, in person at the Boston Marathon in April but I've  really enjoyed our emails and messaged back and forh. Should be good!
Thanks for stopping by,


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