Saturday, August 22, 2015

Discharged, day 3 post-op. How sweet to be home; next step/plan..

I was released from UW today, I would imagine Dr.Bragg would have let me go anyways given we where not planning to do anything right away (this next wk) but I had asked her if I could go home this wknd in any case. No sense in being there as I've said before when I can heal and ultimately when I can feel just as bad at home but in my own environment vs. being in-pt., not feeling good and cooped up.
Per Dr.Bragg and f/up I should make that for a week from now, I guess we'll likely discuss options I am not entirely sure why not later in this upcoming wk given we're just looking at options and if she has been able to figure anything out related to the options we've discussed.
In a way I'd have rather seen her this upcoming week, later in the wk so we could maybe get a plan made and move fwd.. Perhaps though she wanted to have time to look in to the different things she is thinking about? In any case I will talk to her Secretary this coming wk and hopefully can see her on Monday, a week from now? Am praying so, not that I obviously want to have to see her nor do I like that I'm still having to ask her for help but I really hope we could figure something out and sooner than later...
If I am able to see her that Monday i'll have to switch ERT days but I already am supposed to have other Appts. later that wk, for botox (a few mo. behind) and to see my actual Cardiologist (2 different cities, botox is Madison and Cardiology in Milw) for 2mo f/up but I'd make something work if I can, I can always reschedule something.

I see Dr.Kovach (Heart Rhythm dr.) this Thurs a wk before the Cardiology Appt, this appt being for the 1wk med f/up after starting the Ivabradine this past Thurs (day after surgery) which this heart stuff and shunt stuff admittedly has made me think more than a few times about how much more complicated the shunt stuff is now that we have to balance the heart stuff to.. It has been different than when I was leading up to the AVR replacements.
I do need to find out from Dr.Bragg what info she would like from Dr.Kovach, re: the new heart med and some potential concerns she had so he can write whatever it is in his clinic note or talk to her directly.
Part of why she wanted to take a little time before we did anything if I am remembering right was to make sure the new heart med doesn't affect any surgery or anything she might do. I can understand this, doesn't make feeling pretty crappy any easier nor does it make how long it will be till we are able to do anything very easy to deal with but I do understand given the heart issues are a big issue.. I just pray ultimately Dr.Bragg will be able to come up with an idea, preferably replacing the 2nd shunt.

I know I wrote about this last update but I realllyyyy think with our having the current shunt in the lumbar space (actually right now I sort of feel like we're back at exactly where we began?) and we know this drains so well, seems to drain pretty consistent and I know has worked the best out of any type of shunt we've had/tried. This compared to the former TPL Shunt which is where we primarily had the 2nd shunt all but a few mo. of the 2.5/3 or so yrs I had 2 shunts in place.. The TPL Shunt worked ok but no where near as good as the lumbar drains it seemed..

Given the LP Shunt works sooo much better than the former TPL Shunt and as I may have written about before we don't have any infection in CSF right now (had adverse symptoms during the period post the LP Shunt placement to infection being found some mo. later and then LP Shunt switched to the TPL Shunt at that time.
I really feel if we replaced the VP Shunt we could have good positive results in pressure and maybe longer lasting, with both shunts backing each other up in a sense.. I don't feel good now or long parts of every day pretty much due to the 1 current LP Shunt doesn't drain enough on it's own. Not at all ideal but I pray we could try 2 shunts again. Again I know, reading this 1 might think 'she's nuts' to want something else but if you where in my body and had previously had 2 shunts that at time did offer good relief (just not long term) you'd understand I think..

Obviously I don't ideally want any more surgery much less another device (hardware) in my body BUT it just seems like the best chance to get better relief.. I'd do about anything to not deal with these headaches/symptoms at night and so much of the day!
I completely trust Dr.Bragg, admittedly I am always surprised she hasn't given up and just thrown up her hands to say 'we've tried all we can, I have nothing else' but instead she seems to go above and beyond to try and find options.
As I've said many times before I am beyond grateful to her, I can't imagine it is easy for her to not have a simple answer and to not just give up but she doesn't.. it is as i've said amazing to me and I owe her, if only a hug perhaps.

I am always relieved I have her on my side and she seems to really want to help me to feel better. This to amazes me b/c she sees/knowns I go on about my life, kind of living my life around the bad parts of every day/night and many drs. much less people would say 'well she mustn't feel that bad if she is still doing the things she does'. - the thing as anyone with a chronic diagnosis knows is if we waited for when we only felt much better I'd be waiting a long, long time and a lot of my life would be passing by..

In any case please say prayers we can come up with an option and possibly it be going back to the 2nd shunt... As I've said before I ultimately it is Dr.Bragg's decision but I can hope (knowing how weird that sounds I know) we could try this or something even better such as those things perhaps she's mentioned..

I have many things coming up in Sept including Sun School restarts, a Conference in Salt Lake mid-Sept and a few other minor soI honestly have no idea when we would do any surgery IF Dr.Bragg came up with an idea/plan..
Once I realized this earlier today (I don't know why but has now felt like it was August this month so I haven't been thinking of what's coming up I guess) it definitely made me wish we could get something done sooner than later. That is not to be the case so I just ask additionally for prayer for better days and patience and as we sort things out I can cont to deal with this and con't to live my life to a decent extent while waiting and hoping..

I know this update is a little all over the place but I am going to end on this note. As hard as it is leaving the hospital not feeling good I feel like after the 1st few days home I find a new reserve, an energy of sorts I don't entirely feel that helps me deal with waiting, not feeling great and more waiting..
I do have to say, and not sure why it surprises me but It is amazing to me today how many people have asked "are you ok" or "are you with us" (sometimes just spacing out I guess) or similar but "are you doing ok" from the Nurses to family, etc.
What choice do we as patients in complicated situations have but to be "ok"? Between that and the number of Nurses today on D6-4 who know me and my history that asked about the shunts and if I thought we'd ever add back the 2nd shunt. My answer? I can only hope (I know like I've said above that makes me sound crazy) but we know our bodies as patients..
In any case, sorry this is so long and long winded probably.
Thanks for stopping by,

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