What was done today:
Cardiac Catheterization
Electrophysiology Study
Consented but ended up not needing Ablation
Transeptal puncture
The Cardiac Cath was to check the pressures in both R and L sides of heart. The L side is very elevated but R side looked good.
I can't remember exact wording but something to the effect of 'your L side is significantly elevated but not the worst I've seen and thankfully your body is handling (secondary from Mitral valve) this pretty well with the meds you take (meds to get fluid off).
The flip side of my issues if not well managed would be as he said 'your not in and out of the hospital every few wks thankfully'. <-- This is my wording btw NOT Dr.Kovach's; is my trying to paraphrase.
He commented (which I do know from talking to him and Dr.Earing) the faster heart rates probably make dealing with the Mitral valve harder due to less time between each beat for the heart to relax and properly fill with oxygen.
Our hope is we can "kick the can down the road a little longer"; try to lower heart rate, the question is will it help (trying this new heart failure med)? Per Dr.Kovach Dr.E is leaning towards the med, he commented "your not a low risk candidate for MVR, especially given the amount of issues you had with the Aortic valve replacement(s)".
Again along the same lines he commented, if there's a way we can help you feel better with the least risk, whereas OHS is really risk/benefit equation, they'd prefer to take the least risk approach with the best benefit. Some things they can do to help feel better including help get heart rate down which may help me to feel better, to deal with the mitral valve issue.
The actual procedure was done at Children's Hospital (WI) in Milw.
As far as the EP Study, the Ablation was not needed (good in that it wasn't needed, bad in a way as it could have been an easier potential fix than getting access to and trying the recently, newly FDA approved Heart failure med (Ivabradine).
The transeptal puncture would have been using a catheter, using (I believe if I remember right) a catheter tip that freezes an abnormal area after they literally would have punctured a small hole between the L and R sides of the heart. The cold-freeze cath would had it been needed been used to freeze an abnormal signal.
Thankfully this was not needed as it sounded fairly intense and involved w not insignificant risks (though small) that could require patching the newly created hole and/or OHS to repair the dysfunctioned (my own word?) sinus node. Again this part I may not have gotten completely right but is the jist of what is done when needed.
For Anesthesia I did have Dr.Taylor who as I've written about before did both my prior OHS's and the Transthoracic Echo that was done in-between the 2 heart surgeries.
It sort of amazed me (in a good way!) this morning but not only did she and Dr.Kovach have the stress dose steroid (for surgery, cortisol replacement) in place and set but as I think I wrote about last post she had talked to the pre-op Nurses re my Port and accessing it + she remembered the little things from several yrs. ago (I thought your 1st OHS surgery date was coming up pretty soon').
She remembered the joint issues, headache/positioning issues, the meds I took then vs now and somehow we got to talking about those actual heart surgeries + her being happy she was there today 'in an easier capacity' (again my words but essentially what she said) vs. our having to deal with and get access on the airway issues (typically includes glidescope or fiberoptic intubation) with smaller sized airway breathing tube.
I don't think my airway is really anyone's (probable) favorite airway to try and secure pre-surgeries!
For the actual Cardiac Cath and EP Study due to the type of arrhythmia Dr.Kovach was looking for she opted to use very light sedation where I could still talk with them and answer questions they asked (not that I remember! I told her when she mentioned this ahead of time that I was not taking claim for anything I said while under sedation) =) I know there have been times in the past I've had conversations w Dr.Bragg and others while being put under, Eeks!
The EP Study and Cardiac Cath ended up only taking about 2 hrs (they gave a 2-6hr window it could potentially fall in) which was nice, I guess? I know Dr.Taylor took great pains to try and have me as comfortable as possible during the test while on the table and gave extra anti-inflammatory med to help which 'what I suspect will be significant joint pain in the next few days'.
It was nice she and the Team would care and try to prevent this as much as possible.
Due to all that was potentially to be done they type and crossed for blood products, especially I suppose b/c I was kept on the Coumadin and Baby Aspirin leading up to today's procedure and blood clot risk is higher in Individuals w Mech. valves having Cardiac Cath/EP Studies done.
Ivabradine / Shunt valve revision
As far as the Ivabradine
Dr.Kovach seemed ok with my getting the shunt revision, I had to leave a VM for Dr.E's Nurse today about f/up ( a couple weeks with Dr.Kovach to asses the Cath entry sites and more importantly to further discuss where we are at w getting access to the new med.
He did say he has been in touch w the company that makes the med but does have to sort out if we'll need an IRB (review board) approval at CHW to use it/him to prescribe it and that b/c the drug is so newly approved it isn't yet widely available in the U.S so he needed to reach out to the right people and give his pitch essentially about having a patient he and my Cardiologist feel would be an ideal candidate for taking it.
As far as meds I came in on taking, he was going to talk to Dr.Earing about the Cardizem, he doesn't feel it has a benefit and feels we should consider stopping it (not something I am against!) but he did feel we should keep the Digoxin on board as that works differently, by helping to strengthen the heart.
Once we started the Ivabradine I think I may have wrote about before he said it typically takes about a wk to lower heart rate and 1-2mo to see how it is affecting overall heart function and symptoms. It seems from talking to him at that point we would re-eval doing Mitral valve replacement (which no one wants to have to do).
As far as a 3rd OHS and MVR he like Dr.Earing believes it is a risk/benefit issue, ie we likely will have no choice but to do it but is a matter of when. Some in the MPS community have asked me why they are waiting so long to do it and the honest answer is 2. things.
The surgery was scary (leading up to it, not knowing) the 1st time and well not that awesome the 2nd time so we know without almost certainty it would likely be difficult at best a 3rd time when done and what issues would they run in to during?
It's quite possible there is someone out there but I can't say I've ever met another MPS Individual whose had 3 open heart surgeries..
The moral of today is while we didn't find a area to ablate and thus non-med wise hopefully help the to fast of heart rate/tachycardia and seeming related heart symptoms I did have a great Anesthesia dr. working with me (she's very down to earth and yet was so willing (interested?) to learn about what I have/deal with) when I first met her 2 yrs ago and she worked w me today to try and make the Cardiac Cath/EP Study a success as much as possible comfort wise..
Team Effort is really the over-riding thing that makes my care a success most of the time and most definitely what helped today. She (Dr.Taylor) and Dr.Kovach communicated both with me and with each other willingly leading up to today's anesthesia/sedation and Heart studies and before the test today + obviously during/after.
On a side note, I want to share this really sweet, thoughtful note I received from one of my (I consider) closer (as in really cares, go out of way, tries to stay up to date and doesn't give up) Providers prior to today's procedure:
Erica. Will be thinking of you tomorrow. You will do great! Keep strong and see you soon.
Dr.Bragg f/up
Stay tuned, I f/up with Dr.Bragg next wk, am hoping she can tap the shunt and take off some fluid. Also hoping we can sort out this current LP Shunt valve and potentially replacing it w the 'Mininav 5' which has much less resistance. I am still nervous it would really irritate spine nerves more but at the same time these headaches...
Will update again soon,
Thanks for stopping by
Erica
Dr.Taylor, Anesthestiologist
2 years ago (7/23), 1st of the 2 Open Heart Surgeries (OHS)
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