Tuesday, February 9, 2016

1st Post Heart Surgery (Cardiology) F/up. Changes, adjustments, additions.

Today's Cardiology Appt went well enough, nothing to earth shattering. Dr.Earing and Nancy (NP) biggest concern was HR was/still is pretty high which is one of the things they had really hoped this MVR would help and so far Heart rate has not improved and if anything gotten higher. It is very possible as the heart heals heart rate will calm down some though this typically would improve if the heart had more time to relax in-between each beat so it's sort of a double edged sword - heart cant heal as well if heart rate is so high, the new stenosis in the new mitral valve won't heal/heal as well/improve if heart rate remains high as there is less good oxygenated blood getting to heart (explaining this the best I can recall). Apparently most people from what I've read who go in to OHS with overly fast heart rate come out of OHS with a slower rhythm.
Dr.E did opt to restart the Ivabradine, which is the med for to fast of (innapropriate) heart rate and heart failure and said he may opt to add back the Digoxin to but wants to do this all in a step wise fashion. He did say he felt we may be able to stop the new Ace Inhibitor (Lisinopril) in time as he wasn't so sure that would be needed long term. The 1 other med adjustment he did make today was to re-increase the Lasix (gets fluid off) back to the 60mgs, 2x's per day. That's kind of a bummer out of it all, right after OHS they'd decreased it to 40mgs 2x's a day which was a nice positive. =)
As far as the Chest Xray it showed a new, 2nd fluid pocked in the R lung, which I asked could that be related to the VPL Shunt to but he felt that was unlikely as it was new, and likely es along w the on-going cough I've had for some wks. They'll repeat an Chest Xray at the Appt f/up in 2wks to monitor this and I guess to watch heart rate w the meds added back in. Hopefully the cough improves soon as it is a bit disconcerting - the actual OHS incision doesn't hurt and is actually very reasonable (lol, at the Appt today they made a comment about this and my making it seem like almost nothing had been done) but the cough definitely gets some uncomfortable. On the flip side they did plenty of cont'd good natured kidding regarding my ability to fracture the bone from big toe right before this OHS 2.5wks ago and (my paraphrasing) 'Only you Erica could do this before such a big surgery'. =) What can I say?
I know the headaches have been some worse since right after this heart surgery and last year when 1 of the 2 shunts quit working (but we didn't realize that was the cause right away) I'd had an on-going cough for a month if not several months that was pretty bad at times so I hope that isn't the case this time! I will make an apt with Dr.Bragg in a few wks if things stay the way they are and don't improve.
Cardiac rehab is on hold till the foot bone heals, which the Ortho Appt last wk, the Xray still showed the fracture and hasn't exactly seemed like it's healing any to fast! I suppose my using it to drive despite the boot and walking on it unsupported the 1st 1.5wks didn't help a lot either. Once it does heal and I am back to walking on my own i'll start Cardiac Rehab though. Ortho just said to keep using the boot beyond this 2wks (next wk) till the black and blue and discomfort improved. Who knows, my body sort of does it's own thing, beats to it's own tune!?!?!?
Otherwise I asked about if I was ok to travel to San Diego in a couple wks to the WORLD Symposium (Lysosomal diseases) Mtng and Nancy, my NP said it all depended on if things stayed stable. If anything new cropped up they'd not ok it but she felt if things as they are now don't worsen/don't change there wasn't really a reason I couldn't and would give their blessing. I feel positive about it. =)
When going for the Chest Xray before the Cardiology Appt they have to get it approved (even though my primary insurer Prior Auth for imaging is written right in to my Adult Congenital Cardiologist, Peds Neurosurgeon when needed (several other of my Specialists are out of network-based in network Prior Auth coverage exceptions to but with more limited approvals) and yet I get imaging done at UW/AFCH for Dr.Bragg and just sign a form (but have never received a bill bc it's covered). Here at CHW they have to call the insurer, wait on hold for ridiculous amount of time (would be easier if they just called my assigned Nurse Case Manager at insurer as she knows this all) and then wait, wait, wait. Aarrgghh!!! It ends up the Radiology Dept which I do not at all blame for any of this non-sense ends up calling up to my Cardiology Team to see if they request the Xray/imaging as "medically necessary" which my Team does and then it gets covered - which it is already covered anyways. Non-sense I tell ya! And yes I am simply venting.
I got to CHW a little over an hour ahead of the appt to get Labs for Cardiology done (INR was 2.43 or something like that, very close to in-range so dose adjusted a bit and recheck in 2wks). After this and the CXR I went upstairs to Cardiology which thankfully wasn't to long of a wait (and I get it when it does take longer, just was tired today). F/up is in 2wks with another Chest xray and assess overall.
That's about all for now, have Neuro-Endocrine Appt tmrw (Weds) but otherwise the rest of the wk is free, have other things to get done and Z is back by his Mom this wknd so most likely he'll spend Sat night by me. I am sure he'll be a happy kid as it's been something like 3 or 4 wks since he's been able to stay overnight - (the Sat/Sun. I killed my foot which was the wknd before my OHS). I enjoy having him here and miss him so am looking fwd to the wknd. I have a ACHD Mtng at CHW Sat morning but then hopefully pick Z up later Sat. in the afternoon - I need to talk to his Mom yet.
Last but not least I went back to Sunday School this past wknd, was a pretty low key day, no real big or special craft but was really nice to see how excited my kids where when they saw I was back. Love them!
Thanks for stopping by,

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