Friday, November 6, 2015

VP Shunt rescheduled again. New date set... Life is frustrating..

j wrote the note below last evening (Thurs night) so this 1st part is an addendum of sorts... Forgive me if it perhaps gets a little confusing reading this and then reading below, I just don't think it's a bad thing sometimes to share my emotions when dealing w the very real frustrations that come w living w/MPS.
So the plan s written below, surgery for the 12th was cancelled and will now be Nov. 16th, a Monday. 
This is a non-surgery day for Dr.Bragg and is 1 week from this coming Monday. The plan is she'll still work w/Peds General Surgery to place the distal (far end) portion of the VP Shunt.
Because Monday is my normal ERT (Infusion) day this will be ordered for in-pt by the D6-4 Pharmacists and once mixed my Nurses run it for me. As of now the surgery time is slated for 12, which generally means a 10:00 arrival time. I am sure some of whether it will start on time will depend on Dr.Bragg's clinic and if it goes on time or not.
Because I normally get INR checked the day before a surgery it is a little more complicated this time but we tentatively have it planned i'll stop Coumadin this coming Weds, (standard 5 days prior) check INR Fri at CHW through Cardiology who will let me know what the # is and send the result to Dr.Bragg's Team. Chances are likely this # won't be low enough so I asked her NP to put in a 'STAT INR' order through UW and if needed a friend said UW's East Towne Lab is open till 5 on Sunday's. My Access Team Nurses will access my Port on Fri and over the wknd i'll flush/hep lock it each day + I already have the dressings needed to re-dress it after I shower.
Otherwise Dr.Bragg was willing and is going to tap the LP Shunt this wk on 1 of the few days she is back in town (scheduled for Tues) and will draw off more fluid to give temporary relief again. This only helps the headaches for a short few-ish hours but does help appetite and other things longer so in all honesty the relief is much welcomed!
The Appt with Dr.Kovach which was originally scheduled for the 19th was able to be moved up to this coming Thurs the 12th, my original surgery date. A LOT of phone calls, messages and emails ths morning but seems to be pretty well squared away/things in place for the 16th now.
Thurs post - prior to new dates/plan -
 I just need to say 1st, I am not venting about Dr.Bragg or her Team, in fact I am just venting about how sucky life is sometimes.
That said Oh.My.Gosh, I feel like this stupid VP Shunt surgery is NEVER GOING TO HAPPEN! I'll know the new date tmrw, but Dr.Bragg's Secretary called late this afternoon, something came up and Dr.Bragg has to go out of town again late next wk. 
She is out of town now,  but she'll be back in town Monday till I assume Weds. I asked if she did have any clinics or time or if she thought we could maybe do intermittent shunt taps as we have been? Sure the taps don't last long headache wise but the somewhat longer improvement in appetite and for that matter from a headache standpt being able to sleep a bit better at night is a little better than nothing?! 
Believe me if I had the choice I'd have surgery still be next Thurs, it sucks, actually it sucks ALOT. That suckiness said that is life and frankly I just seem to have this happen in general more than I'd prefer (happened several times last yr, has happened with other non-shunt surgeries, etc). I can't even explain how frustrated this makes me or how disappointed I felt at this surgery being rescheduled again (was 1st originally scheduled to be this Tues, the 10th). I JUST WANT TO FEEL BETTER!?!?! Life will go on though.

I'll be frustrated about it now, feel angry (at MPS, at my body, at how little seeming control I have despite all that I do to try and have control) and then I guess i'll move on. I don't think I can say i'll accept the change b/c Thurs is going to come next wk and I am going to be frustrated all over again but at the same time I am already trying to re-arrange my schedule to make appts that where the following week to hopefully be next wk. I am trying to just do what I can to make this a little more bearable in the mean time. I have to find a little light or positive or something in this or otherwise honestly i'll probably blow a lid at my frustration at my body and MPS lately. This freaking sucks!
Dr.Bragg did say she thought she'd be able to find space to tap the shunt and take off fluid between now and surgery. I don't know how long she is out for so not sure if it would just be once or what. Any little bit would help I guess and I am glad she gave me that info. I know she isn't doing this on purpose so I don't blame her it just still doesn't make surgery being even further away yet again any easier. It's like the surgery that never will happen it feels like sometimes. Literally we've been planning for this shunt in a sense for months and I've been essentially waiting since last May, since the shunt infection and our removing the 2 shunts and only replacing 1 back in to go back to having 2 working shunts.
When talking to Anna, Dr.Bragg's Secretary, I asked when she thought surgery might be rescheduled to (I am more than sure I sounded less than happy, not on purpose and it isn't Anna or anyone's fault I just well it's hard although I know I didn't take my frustration out on Anna, I was upset but not rude). Anyways, when I asked Anna about a new date she thought Thurs, the 19th which of course (why not, right?) is when I am scheduled to f/up with Dr.Kovach (heart rhythm dr.). 
Anna was going to message Dr.Bragg to see if Dr.Bragg would let surgery be done as something other than a 1st case surgery in which case she (Anna) felt surgery could be atleast a little bit sooner. This to sucks frankly, actually, I absolutely hate surgeries that are not 1st case as they tend to run behind schedule. I am then hungry and it just gets to be a really, really long day. I just wish surgery could be next wk, which it can't be obviously.
Since it cant be the 12th (which go figure my favorite Nurse would have been there that Thurs-Sun and then if I was still there she would have been there Tues-Weds to) it would be nice if surgery could be that Monday, the 16th but there it would be an afternoon case I am sure. 
I know to Dr.Bragg has to work with the Peds General Surgeon due to the Pleural space placement of the distal (end of) the VP Shunt catheter so that to makes rescheduling the surgery a bit more difficult.
I am to call Anna Fri morning if I've not heard from her by 10:30 to get the new surgery date so I am not sure what other date she might be considering. As I wrote above maybe that Monday after Dr.Bragg's clinic or that Weds but I am guessing it will be that Thurs..? I know Tues is her normal surgery day to but would assume she already has cases that day, I don't honestly know. What I do know is this shit can't come soon enough <-- sorry for language but is true (which is sad bc seriously who really wants surgery?)! =/
I did call Dr.Kovach's EP Nurse line and sent him an email as well to see if the Appt on the 19th could potentially be changed to next wk, the 12th, the original surgery date. I know Dr.Kovach was wanting to see if our putting in the VP Shunt, and thus reducing ICP (pressure on the brain) would help bring heart rates down. I hadn't originally thought to much about this before but we dealt w the same high heart rates back prior to May, before we took out the 2nd shunt so I personally don't think our putting back in a 2nd shunt again now will help bring heart rates down so we'll see but said as much to Dr.K...
This all said atleast on a little bit of a good note, although it hasn't really helped how tired I feel or the intermittent breathing (suffocating-ish/short of breathe) feeling the Ivabradine has helped HRs some. Based off this last Holter monitor, done 2wks after we increased the Ivabradine to 7.5mgs, 2x's a day the average Heart rates have went from ~100s to average high 80s. That is atleast some good news, if only it would help symptoms! I know my Team has said they can increase the new med (Ivabradine) to 10mgs, 2x/a day so I am unsure if that will happen. Dr.Kovach had also said something about he could add back a prior heart med or we could talk about replacing the Mitral valve.
Sometimes admittedly lately I feel like risks or not just doing the MVR might be worth it. Argh at decisions and sometimes difficult ones! I guess we'll see what he says at the f/up and what the next Echo shows in Dec., + talk to Dr.Earing (my Cardiologist) then to.

Anyways, remember the last 1/2 of this was written before I knew the new surgery date.
Thanks for stopping by, just over a wk now..


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