Due to having intermittent symptoms of the heart failure like symptoms again on and off for the past week (started while I was in San Diego but VERY intermittent) I messaged my PCP to ask her opinion if she thought I needed to do anything. She in turn recommended I either see her and she would order an Echo "in the next day or two" or she recommended that I call my Cardiology Team and let them know as she was concerned about a clot given the INR had been out of range for so long.
I did call Cardiology on Weds finally and they wanted an Echo sooner than my next appt and to have me come in to clinic after (Echo's are done in the same clinic as the Cardiology Team).
The consensus is that there isn't a clot (a good thing) but the mitral valve is worsening and congestive heart failure symptoms are recurrent.
Monday I have to call with what the "heart rate at rest is" in order for Cardiology Team to decide if the new med switch (nadolol, a beta blocker replacing the current BB I am on) is working adequately or needs adjustment. Dr.E's goal is to reduce HR to at or below 60bpm but no higher as he is concerned the heart isn't getting enough time to rest in between each beat and thus not getting enough oxygen and working to hard which in turn puts excess pressure on the already moderately stenosed (narrowed) and leaking mitral valve. He did talk about this could be b/c of a relatively common issue they see in post-OHS pts where the nerve signals in the heart can get nicked during surgery and need time to repair (not sure if I got that completely right) and/or the heart rate just becomes much faster after OHS due to the stress of surgery and re-modeling occurring. Again not sure I got that completely right.
Dr.E and Nancy did mention possibly upping the Lasix (not high on my awesome list) or adding Digoxin which works by reducing how hard the heart pumps (but acts differently than how the Nadolol works at slowing the heart rate). I follow up then in about 3 weeks.
The goal of this new beta blocker replacement is (as mentioned above) to try and slow the heart rate and the recurrent heart failure (an issue I had problems with prior to the 2 OHS's last Fall/Summer) as I was considered in stage III/IV Congestive Heart failure then. Slowing the heart rate in turns means more time for the heart to relax in-between each beat and the hope would be that we can keep the mitral valve from getting worse and thus needing a 2nd valve replaced for some time. Given all the scar tissue from the 1st 2 OHS's a 3rd heart surgery would likely be even more difficult per Dr.E and not something he wants to have to do for as long as we can manage. When one has 2 mechanical valves your INR (blood thinner level) thus has to be higher at 2.5-3.5 instead of my current 2.0-3.0.
On a good note, a little over a month since the last shunt surgeries my INR was finally back in range today at 2.2! I'll re-check INR again a week from Monday (usually my infusion nurse just draws it while I am at ERT and then she runs it across to the actual lab at Children's.
This is a table of what the various measurements of Mitral valve stenosis means (in my case there is stenosis (narrowing) and regurgitation (leaking of blood backwards).
The degree of mitral stenosis is determined by the mean gradient of the mitral valve area
Mild mitral stenosis <5 mmHg >1.5 cm2
Moderate mitral stenosis 5 - 10 mmHg 1.0 - 1.5 cm2
Severe mitral stenosis > 10 mmHg < 1.0 cm2
Headaches have been an on/off issue this week, as if the heart symptoms haven't been enough! The usual worse at night (but this time REALLY bad by mid-morning) and then improve after being up for a few hours but worse again if I lay down for any reason such as for the Echo today. Thankfully in the case of the Echo it was only an hour and symptoms where back to pretty much normal by the time I got out of my Cardiology Appt and then stopped at the Pharmacy.
This hasn't been the best week as far as feeling great! I guess you just have to keep going fwd though and do the best you can!
Thanks for stopping by,
Erica
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