Friday, November 13, 2015

Surgery Mon., (Last) Tues Shunt tap, Thurs Heart Rhythm (med) f/up, Surgery .... heartache and loss.

Heart Rhythm Appt - Ivabradine f/up
I wrote below (the other day) about the appt with Dr.Bragg to take fluid off; today (Thurs) I saw Dr.Kovach, my Heart Rhythm dr. for Ivabradine f/up re the 1/mo (essentially) med f/up.
He is opting to keep the med dose the same as on the last Holter monitor the average heart rate was down to the 80s from a average heart rate of low 100s (100-110s) and he felt even if we where to lower HR further he wasn't so sure it would help symptoms more as we've not really made a big difference in symptoms I deal with heart related.
After thinking some about the appt given heart rates at virtually all appts I have been at and the few times I've read it on the phone app I have it's still been high 80s to 100s I wonder about upping the Ivabradine to 10mgs maybe during the day and keeping the 7.5mgs at the 2nd (later in the day) dose but will ask this when I f/up with Dr.Earing in 2wks (1st of Dec., Echo and Appt).
Otherwise Dr.Kovach and I talked again about do we add back in say a beta blocker, see if that helps symptoms? Do we give this Ivabradine more time? Or do we just be done with it and say we're going to do take the risk and do a 3rd open heart (OHS) surgery despite the unknowns and risks?
It's never been done 3x's in an MPS pt. but at a certain point your sort of just treading water, getting no where in a sense and so we're trying to weight when is a good time (in a there's never going to be a good time) with my body and the MPS risks?
He planned to talk to Dr.Earing (my Cardiologist) later this afternoon (I saw him late Thurs morning) and then they or we would discuss again after the Appt on the 1st what would be our next step...
I struggle a little bit with this all, I know I appear ok enough to them and that some of my symptoms though they would make more sense to Dr.Earing b/c he's known me for so many years I don't think they are always clear cut to Dr.K.
I am hoping (even though I really do trust Dr.Kovach) that when I see Dr.Earing he will be able to shed a little better light on some of the symptoms I have been having as I think I may have had Dr.Kovach perplexed a little, which I understand I think.
I don't always do a good job painting a picture of just how bad I feel often on top of I look good. This all said I don't think it's that Dr.Kovach in any way doesn't believe me I think he's just being cautious which I am ok with, he kind of wants to see how this shunt surgery goes and he wants to talk to Dr.Earing.
In any case we'll see how the Appt with Dr.Earing and the Echo goes 12/1 and then f/up with Dr.Kovach I guess will be determined based off that appt.
Talking to Dr Bragg today (Tues), both before and while she tapped the LP Shunt (to remove CSF) she asked/commented was surgery rescheduled to Monday for sure now? I think she jsut wanted to make sure it was on the schedule and we have it planned. I know she can see it on her schedule but on her part it's more about verifying we're on the same page I think. In talking about it she said something about finally we'll get you feeling better and I commented something to the effect "less than a wk to surgery; isn't it crazy to actually be looking fwd to this surgery /wanting it to occur?"
She laughed and said something about understanding and my not being the only Patient to ever say as much. Lol, I am pretty sure I said the essential same thing to Dr.Kovach today which he knows this has been in the works for some time. Lol, I think he got it to why I'd be kind of looking fwd to it being done without actually looking fwd to the surgery itself. Still it IS crazy and I know it!!!
Dr.Kovach's Nurse asked me at the Appt today (Thurs) "Do you like being there?" (in the hospital) - I am pretty sure I tried to not bust out laughing but said something to the effect if it weren't for the cleaning/not being able to clean myself (floors especially, broom anyone?) I could perhaps stand it a little better as I do get along w the majority of the Nurses and Staff fine and a few of the Nurses who traditionally ask to be on my 'Care Team' go out of their way to make it all more bearable which does indeed help. Still there's nothing like being at home! I can tolerate it but I am not a fan of hospitals.
I didn't ask Dr.Bragg, honestly, that would seem nosy to me but non-the-less Dr.Bragg said the reason she'd had to cancel and reschedule Thurs's surgery was her Husband's Mom had gotten sick unexpectedly and Weds was the 1st day she and her Husband where able to get flights to CA (where he is from, Dr.Bragg is originally from Chicago suburb).
No matter why she would have to reschedule and as much as I want surgery to just be done I could never be upset at her for needing to unexpectedly go out of town AND is sweet on her part she cared enough to send me a msg last wk + explain today.
For that matter for her to see me today for the shunt tap on her non-clinic day when she wouldn't have had to was very nice.
Just a few more days, God willing to (hopefully) feeling better.. The plan at this point is to place a VPL (Ventriculopleural) Shunt w Peds General Surgery assisting her for the portion of surgery where she'll place the shunt catheter in to the area around the lung space (due to so many previous surgeries and drain tubes) in this area causing scar tissue.
The head (brain/ventricle) portion of the shunt placement Dr Bragg said previously she planned to use a system where she can place my head in a static immovable position (I think it may be similar to what is used during C-spine/neck surgeries) as she said it's what they use in brain tumor surgeries to prevent any movement of the head.
They use that to try and get the the best placement of the shunt catheter in to the ventricle (unsure if it's the lateral or the 4th ventricle she's placing the proximal shunt catheter in) but placement will be at the back of my head.
She uses a computer and neuro-endoscope to get a good, direct view inside of the ventricle for best placement of the shunt, trying to avoid problems we've had in the past w this particular ventricle/placement.

I'll be saying my prayers! =)

Seprately on a really sad, not very great news note and has made this surgery harder still, my Grandma who has been sick and in a nursing home for several years now passed away Thurs. night. For her sake it's actually probably better, she's free of earthly pain and suffering and in a place, so, sooo very much better than earth. She's reunited with her husband my beloved Grandpa and above all in the glorious realm of God our heavenly father.

I know God has a purpose for everything but that doesn't make it easier to understand. I trust in God and I believe he has a purpose but it doesn't make my tears of loss any less. I worry about next wks surgery and not being there for the funeral. I don't think I need to be there to remember and to have memories of my Grandma but it does kind of suck. And I worry most about not being there for my Mom. She doesn't say much about it and doesn't share her emotions a lot (we share this trait in our family, hiding how we feel) but my Sister and I have talked several times about Monday's surgery and the funeral arrangements and we both worry about Mom and can tell she's upset. Why wouldn't she be though, that is her Mother and even if Grandma hasn't been the same for a long while that is Mom's Mom.
Anyways sorry to make this kind of a downer end and all, if you could keep my Mom and family in your prayers. I've prayed about it, talked to my Mom about it, talked to my Dad some and especially talked to my Sister about it and have decided to just go ahead and go forth with Monday's surgery. This means missing my Grandma's funeral but I know her spirit isn't there anyways. It is my Mom I really worry about with it all.
Ultimately even in In all things we may not understand God truly is good, and atleast we know in him a better place awaits for those we love and lose and who have had a faith in God.
Erica ***On a add in note, INR today per Cardiology was down to 1.41 after being off for just a day (last dose was Weds) so Dr.Bragg's NP said I did not have to re-check another level before Monday's surgery. Arrival time for surgery is 10:00 with surgery at 12:00, obviously this could vary a little given it is after Dr.Bragg's clinic and not a surgery day for her.
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