I think the biggest things going on, perhaps ironically and even more ironic given the cough is much improved BUT when it does occur it's a BEAST! Anyways sternum has been plain uncomfortable usually having to do with the way I sit (hopefully having gotten the botox last wk which I was some months behind on doing (is usually every 3mo but I'd had to reschedule the last set) so that I hope calms the muscles and as I continually remind myself to not sit fwd (my unfortunate natural pose often without realizing I do it and extremely hard on my mid-back, now sternum and shoulders).
Anyways that hopefully helps calm things and in reality could still be faarr worse! I imagine my sleeping upright and on my side/stomach doesn't help much, either.
Energy wise and just feeling, well whatever I feel is about the same? I f/up w Cardiology per their 2wk today, Tues.. Last wk, Nancy my NP who I'd talked to over the phone re-added the Digoxin which is another med that was stopped right after this last OHS (she restarted it at 1/2 my prior dose last wk) as they con't to try to bring heart rate down, their goal being no higher than 60s I guess if I remember right. As it is now it runs (and has run for yrs now despite meds we've used and been using, including using the Ivabradine helped bring it down some since last summer) low 100s to 120s whereas at least if nothing else before thus MVR Surgery we'd pretty consistently gotten it to the 80s and 90s range most of the time. Not entirely ideal there either but better than is now..
Today they upped the Digoxin to the full 250mcg I was on prior to the OHS 3wks ago. Yay, yippee? (Insert a little Sarcasm).
After the OHS heart rate ramped back up so we've been back at the drawing board in a sense evaluating and trying how best to get heart rate down in order to improve the moderate stenosis (narrowing) in the new mechanical mitral valve and improving those things should in turn help symptoms... Dr.E seems to feel positive that getting HR down will help the new stenosis (narrowing) in the new valve so I hope he's right! I trust him but hey I'll be the 1st to admit I still feel skepticism, I suppose bc things are never easy peezy and dull? All in God's time, right for whatever his (God's) plan is I guess..
Other things at today's appt, they are running a 24hr heart monitor (basically a Holter monitor but is wireless) again (thee whete done intermittently prior to the OHS to see overall heart rate trends and make sure at least the overall heart rhythm is just an inappropriate sinus tachycardia (inappropriately fast) vs some thing else.
I think my Team feels it's likely just IST yet but faster since the OHS but they want to be sure as they figure out a plan.. This in turn as long as it's just IST will give them a better idea of options and to if we can start Cardiac Rehab as they think the Cardiac Rehab people are going to freak out at my HRs. Odd!
My Team feels it seems if they can show this is my new "normal" and not going to cause problems then it should placate the CR folks.
Otherwise, and I don't know this part entirely but they mentioned potentially if we continue to be unable to get HR down with meds they may try going back in via an Heart Rhythm Study. If this was done the focus would be to ablate (get rid of via freezing in a sense) any abnormal pathway. I don't entirely remember this part as we where unable to find anything last summer when Dr.Kovach did an EP Study in the Heart Lab at CHW but maybe they are wondering if this OHS could have created/complicated what was felt to be the wandering atrial pacemaker? I honestly can't remember, will read their clinic note once received to sort that. I know going in to this last (MVR) Heart Surgery Dr.Mitchell, my Heart Surgeon mentioned with each has OHS a Patient goes through the risk of heart rhythm issues increases. Time will tell I guess?
As far as the Chest Xray repeated today I can't remember what it was exactly with the result other than they thought the fluid area was some improved on today's images but overall they said they don't know how to take the overall R lung picture/fluid. Thinking about that now I am not entirely sure what they meant but they didn't seem to concerned overall. The VPL Shunt just complicates that picture and what's normal or not normal and that taken in w my bigger picture just makes it unclear to an extent.
The other thing I asked Dr.E his opinion of my going to San Diego next wk. Overall I am exhausted a good bit of the time and headaches have plain sucked. I keep getting these mini "migraines" (they aren't really) but they aren't full on migraines, it's more if anything causes fuzzy vision for a short period then goes away and cone back a few times a day. With shunt issues this is kind of my 'normal' when 1 shunt seems not to be working well although these don't always occur. For whatever reason since the OHS 4wks ago the headaches have cont'd and gotten a little worse over time. Frustrating given it really was so much better (nit perfect but better) prior to the Heart surgery 4wks ago!
Just goes to show how interconnected our body systems are and how doing 1 thing can unintentionally adversely affect another!
On a separate note I called and finally made an Appt with Dr.Bragg today, sort of funny but her Secretary (who is great) when she called me back made the comment (my paraphrasing ) ' we where just talking about you, how we'd not heard from you in a while the other day', she did say Dr.Bragg had updated them what she knew (she though surgery went well). Clearly I have spent WAY to much time with Dr.Bragg and her Team but sweet they'd think of me when I've not talked to them in a while. :)
Separately, INR today was again close but no cigar, this time off by just a couple so dose was adjusted and is now 7mgs x 7days, recheck in 2wks from this past Mon. (yesterday) which is the day we usually pick bc it's my Infusion day so I have my Port acceded by my Access Team/Lab Nurses, have INR drawn and go over to FMLH for ERT after.
Stay tuned, never dull I guess? I am hoping things start to even out, I get a little more energy and feel a little better!
Thanks for stopping by,
Erica
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