Neurosurgery Appt; nothing really. OHS-Heart Surgeon Appt next wk.. Sometimes it's just hard..

Had Appt with Dr.Bragg today, this was rescheduled from yesterday due to the weather and not her clinic day so it ended up I got done in Rardiology about an hour before the Appt was scheduled for.
I just went over to the Children's Hospital and figured I'd wait, turns out she was in a surgery so she sent 1 of her Residents down (1 whom I think will be a really good Neurosurgeon but not really familiar w/my not very normal presentation) and anyways wasn't exactly a forthcoming appt. I suck at explaining my symptoms and especially what I have been experiencing lately so wasn't to optimistic when the Resident came in that anything would be figured out.
After we talked he went back and talked to Dr.Bragg in the OR and they called back down to 1 of her NPs who came and talked to me again. I figured this would be the case b/c I don't present very normally, I suck at explaining how I feel/what's different and yet Dr.Bragg is pretty good at figuring me out while most others are not generally. Anyways Dr.Bragg I guess opted to wait and see (fine) and I should call them back next week with an update or if anything has changed. Given this has been going on for a week or more and the memory/feeling very off has been since the 1st surgery (hard to explain this one) but had improved also a good deal when we turned the shunts down to drain the most (lowest setting on each shunt) I am not all that optimistic it's just suddenly going to improve. Can hope right?
I have no idea how to explain this and if I did I think it would help me explain it to Dr.Bragg who in turn then might have a better idea. I do 110% think (know) it is shunt related just don't know what or why or how to explain symptoms.
I have been wondering if the VPL Shunt is either sitting against some weird spot in the brain or in a spot it's never been before that can cause irriation and thus changes in the areas I've been dealing with? Again I honestly just don't know how to explain this. I do think this shunt (VPL) is working as when it seems to drain several times a day the irritation is very present albeit even if annoying I can live w the irritation b/c it typically means i'll finally feel some better. - Honestly I feel like I am talking in circles trying to explain this!?..

Even the vision issues, though I've not received my new glasses/lenses yet I have to admit I am not very optimistic this is going to help the overall symptoms either as it is the same visual presentation I get anytime there are shunt issues. Am still hoping a little though.
I do wonder and wondered even before we put this 2nd (VPL) Shunt in if the LP Shunt is not working well or not working very well for a couple reasons.
1. Prior to our placing the 2nd shunt in early Nov. when we'd tap the LP Shunt we weren't able to get very much fluid off and was very uncomfortable during the taps. I have had on/off leg pain which I also had last yr when the TPL Shunt wasn't working but we where not aware and the leg stuff just gradually built up to worse and worse over months but our being unaware it was caused by the non-working/not working well TPL Shunt made it an issue we just tried to then manage. The leg symptoms completely went away when that shunt was fixed (or maybe that's when it was removed cant remember exactly).
It' quite possible it is not the same issue now but seems similar; who knows?
In any case I don't know and wish it would just improve on it's own. I obviously like and appreciate Dr.Bragg but so wish I didn't need to ask for her help and so wish this symptoms would just go away on their own.
Admittedly (and I rarely share how I feel, today being an exception on fb and here) I worry a bit about if I end up going in to the upcoming OHS like symptoms are now seems a little daunting. =/ I also wonder from talking to a friend whose daughter also has complicated hydrocephalus (but only 1 shunt) but has multiple valves in place.. Her Mom said this was so her daughter wasn't going in every other wk for revisions.. We did try something similar back when I'd had just 1 shunt and didn't work at all b/c way to little CSF drainage..
I wonder would adding a 2nd valve to just 1 of my current shunts maybe help better now? Obviously I'd still have 2 separate shunts and would trying a 2nd valve in just 1 of the 2 shunts to slow CSF drainage a small amount? I don't know and not sure what Dr.Bragg would think but worth asking her about I guess? This way 1 of the 2 shunts would still drain free flow? I cant say I feel entirely optimistic we'll ever figure a perfect answer out but worth asking I guess? I do trust Dr.Bragg, atleast she hasn't given up so far..

Heart Surgeon Appt
I meet w my Heart Surgeon next week, not sure if she is/was able to arrange her schedule to be there but if so the Anesthesia dr. whose done all prior heart surgeries and procedures in the last 2.5yrs was going to try and arrange her schedule to be at either this appt or at the pre-op appt as she wants to be able to have in place an immediate post op plan for how long they'll keep sedated/intubated after the heart surgery and better management plan this go round. I trust her and know she has been thinking about this for some time so am glad this dr. has been considering this re post op management.
I have some questions for the Heart Surgeon and my Team including
1. What is new Coumadin/surgery blood thinner dosing when we do the 3rd OHS/2nd implanted heart valve?
2. Is the Port going to be ok in this surgery? - An important question to me to know/have a plan b/c of the difficult peripheral IV placements and weekly ERT Infusion.
3. What valve (mechanical I know) is he planning to use and straightfwd OHS (vs aortic valve we had to do aortic route enlargement in order to use an adult size valve) or does he feel he has to do something else?
4. On the off chance they do do have to place a chest tube on the R side what is their plan w the VPL Shunt catheter (ie what will they do with it, place via connector with my LP Shunt, externalize, etc)?
5. What is immediate post op plan (this goes more to my Anesthesia dr.).
Just some questions I have and better to ask them ahead of time since I am meeting with him next week, a few weeks ahead of the heart surgery.
Stay tuned, if you believe in it please say a prayer I an able to sort these headache/weird symptoms out and 2. things settle. I do not like having to ask my Providers for help and feel bad when it's less than clear.
Thanks for stopping by,
Eria

Eye Appt, seeing Dr.Bragg.. Christmas was still good.

Last wks Eye Appt went ok, turns out there where changes in several areas though I am not sure I'll remember it all correctly.. Vision wise the astigmatism is worse, far sighted vision has worsened and he added to my eye glases script for near sighted issues as well which he said had worsened since last yr. I can't remember what the 1 other issue was but mustn't have been to big. I did figure out if when they put in the dilating drops you don't keep your eyes closed the entire time they say your vision will be blurried but certainly not as out of focus as otherwise! This was nice and good as I had somewhere I wanted to be a few hrs after!
This yr the Eye dr. highly recommended (emphasized repeatedly) that I add the bifocal option to my new far sighted lens script. In addition last yr this Dr had recommended bifocals but the script was mild enough I could get away with out it (mostly just didn't want to adapt, lol) and honestly when the shunts where really good vision for reading was much improved so those periods where shunt(s) weren't as good I just haven't read much.
Thankfully things like this I can enlarge as I type and edit (though clearly anyone who reads this knows I still seem to likely miss enough). =)

The vision issues have admittedly stunk some as I love picking up a good book to read so perhaps it will be a good thing if I can get used to having the bifocals on the new frames as I can hopefully read more easily again?
Hopefully these things will help overall though at this pt (not yet having the new script or frames) I admittedly am thinking it's pretty unlikely the worsened pressure/vision is going to improve just by having the new/stronger glasses (lenses). In the past almost anytime vision was like it is now it would improve when we got the shunt/shunts working better again so I admittedly just don't know. Who knows?
I should get the new frames w/lenses (very similar in style to my current) sometime later this wk.
Because the pressure/headache type symptoms just seem to be getting worse over the past few weeks and not at all improving + the vision and in general so many areas just off I talked to Dr.Bragg and am going in to see her tmrw (Tues). She would have seen me today (Monday) but the weather here in WI is pretty miserable so she offered to see me Tues. which I am grateful for. I think she may be on vacation or not in the office the rest of this wk, I am not entirely sure but whatever the case very grateful she made time to see me.
I was really, really, realllyyyy trying to avoid having to see her (not b/c I don't like her, she is more than kind and has done so much for my care) but just want to figure this out, this time has been weiirrddd in many ways compared to many shunt issues.. I am always amazed honestly she doesn't give up and doesn't seem to get tired of trying to help me!?! I am definitely grateful though.
Like I said I really wish I wouldn't need to ask for her help, again not b/c she's not in reality amazing but I also know these symptoms are so off, worse than sometimes (but not vomiting off, just off in a weird, hard to explain way) so Dr.Bragg's Secretary called this morning and they've scheduled a CT Scan + Appt with Dr.Bragg Tues afternoon.
Hopefully, maybe some simple answer? I meet with the Heart Surgeon next wk Tues and this wk due to the weather today am missing ERT. It is a LITTLE frustrating that given FMLH's infusion clinic is open 7days a wk they can't manage to fit in the ERT Infusion a different day this wk but it's always that way "b/c your infusion runs over such a long period". When at CHW and my Infusion Nurses did ERT 1 day a week then had regular jobs at CHW they still managed most of the time to be able to reschedule infusion for a different day during the wk if I was sick or bad weather.. FMLH is CRAP in this regard!
Ironically, unrelated (and I don't at all regret not taking the earlier date) but had I opted for the 1st OHS date offered 1.5wks ago i'd be done with the 3rd OHS and on to recovery. Like I said though I don't regret not taking that 1st offered date - I am glad to have been able to spend Christmas outside the hospital! We had a good few days, even if I wasn't feeling the greatest at many moments I am still very, very grateful I was outside the hospital and with family!
Will update any info from tomorrow's Appt with Dr.Bragg in the next day or two.
Thanks for stopping by,
Erica

Nothing big, little updates... things on my mind..

Driving home tonight, from Infusion I had a lot on my mind, particularly thinking about the shunts, on/off headaches (definitely improved with the 2 shunts back in place which I am very grateful for yet at the same time there have been some pretty brutal momemts (days)! There are some moments, usually at night or in the early morning when the symptoms are there - still improved with the 2nd shunt back in place but symptoms there.

Anyways in addition to that I was thinking about the upcoming 3rd Heart surgery (OHS), about my Sunday School kids (I know random, scattered thoughts) and anyways turned on the music I have downloaded on my phone app to distract my thoughts.
This in turn I started thinking about favorite hymns and bible verses - again random but at the same time thoughts that bring great peace to me, probably bc these are songs and verses I've always liked.
Bible Verses
Ecclessiastes 3: 1-?
Ecclesiastes 3 New International Version (NIV)
A Time for Everything
3 There is a time for everything,
and a season for every activity under the heavens:
2 a time to be born and a time to die,
a time to plant and a time to uproot,
3 a time to kill and a time to heal,
a time to tear down and a time to build,
4
a time to weep and a time to laugh,
a time to mourn and a time to dance,
5
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain from embracing,
6
a time to search and a time to give up,
a time to keep and a time to throw away, 7

a time to tear and a time to mend,
a time to be silent and a time to speak, 8

a time to love and a time to hate,
a time for war and a time for peace.

Psalm 23 - The Lord is My Shepherd
1. The Lord's my Shepherd, I'll not want;
He makes me down to lie

In pastures green; He leadeth me
The quiet waters by.
2. My soul He doth restore again
And me to walk doth make
Within the paths of righteousness,
E'en for His own name's sake.
3. Yea, tho' I walk in death's dark vale,
Yet will I fear no ill;
For Thou art with me, and Thy rod
And staff me comfort still.

Back on medical-OHS related stuff, my Endocrine drs office called last wk, they sent over their instructions for pre/post Heart (OHS) Surgery to my Heart and Anesthesia Team.
Given its the same Team in entirety as the past 2 OHS they likely know the drill but my Endocrine just wanted to be sure. I am grateful she is so in depth and cares to be thorough.

Headaches have been wildly up and down this past couple wks, pretty much gone by the end of the day but the mornings pretty well stink. Yay hooray but want to pound my fist through a wall in some cases?..But seriously it still is better than prior to us putting the 2nd shunt back in, weird but true! I don't want to call Dr.Bragg, the symptoms are variable and yet I don't know do I say something to her before we get closer to the OHS date (about a Month away)? Damn I don't know what is the right thing I should do and I know Dr.Bragg always says we're a "Team" (I believe her, I don't think she would just say this) but I also so don't want to ask her for help again. AGGHH!!! Honestly I think the hardest thing since this last shunt surgery even though it had greatly improved in the 1st 2 wks is the odd little things with memory, like i'll be driving and while i'll know where I'm going i'll think I'm going the wrong way (but beats the other wk where I would turn and go the wrong way, was directions I'd take say to get to my Apt but totally not where I needed to be going at that moment or I'd be at a store and have to think for a couple mins before I left which ways I needed to go to get to the next stop or home! Now I just feel off with littler things like writing, still really weird with filling out forms/worksheets/writing in general, i'll know what I need to write but literally have to think about how to write letters before I can get them right OR lots and lots of white out! My poor Christmas cards this yr, some where fine, others not so much! White out really became my friend - almost funny but also frustratingly stupid bc I would know it was wrong but had to think about before I could make it right. Ahh well, my poor brain is just got a little stupider I guess?..
This wk is Christmas, hard to believe but also beautiful and so grateful to have spent this Christmas out of the hospital!!! I know 2016 already has the heart surgery scheduled but I celebrating 2 Christmases in a row not at UW or any other hospital and my 1st year in 4yrs of teaching I was able to not only plan but then also be at our Sun School kids Christmas Party. - I thought it went well, the SS kids seemed to have fun and I especially loved the hugs I received not only from my kids, in my class but even from a kid or 2 I had in yrs past! Love all of my kids and seeing them happy while also learning.
Thanks for stopping by, will try to update again soon, if nothing else I meet with my Heart Surgeon in a couple wks, after the Holidays.
Erica
>

Odds and Ends; nothing big. Shunts; Good, Frustrating, good.

Nothing big to update; we've made adjustments to the VPL Shunt which have made my feeling so off center (thinking?) better - not perfect but sure better a and that IS nice! Vision is still off BUT Better than it was.. before it was just kind of a mess in general - I could see and do things but lol, it was not normal by any measure. Now it just seem blurry with trying to read (which is not my normal either in reality, I feel like the LP Shunt is the better primary shunt) and I feel like the 2 together does make it much better as the day goes on but damn these mornings SUCK! Atleast today (Fri) was the best morning so far though, yippee!
Anyways I've made the Eye appt with local Optometrist and still need to set up with my Neuro-Opthalm. (I don't have a regular Opthalmologist). Who knows with this crap!?
I can remember Dr.Bragg saying something along the lines last year with the 2 shunts how they work better together but we know together the 2 don't really add up to 2 shunts and I think/knew she was absolutely right then and I know she's right still as headaches get so much better as the day goes on but still no where near as good as say when we have an External Drain (EVD, an external shunt, drains spinal fluid outside the body) in place... nor as good as when we do shunt taps and drain fluid off. Still i'll take this and who knows maybe each day will con't to get a little better or maybe it is that I need stronger glasses rx and if so i'll take that to. Whatever helps, little steps! Now sure beats a week ago or almost 2 wks ago!
I asked Dr.Bragg 2 questions, both why she did she think the pressure headaches would be so much worse in the morning and then get better as the day went on, almost to a normal as the day goes on? And the other if she knew, on the off chance if a a R sided pleural chest tube would have to be placed how would this work (My Cardiologist and Heart Surgeon told Dr.Bragg they didn't feel one would be need to be but would have a plan in place in case a R sided chest tube where) and anyways with this upcoming 3rd OHS did she know what the Team would do with the shunt catheter in the mean time on the off chance a R sided chest tube is needed?
So far the consensus seems is they feel the chance of needing a chest tube on the R side is small but if a R sided chest tube is needed the VPL Shunt would have to be I think per Dr.Bragg externalized and at some point probably connected with my LP Shunt in the peritoneum. Then later Dr.Bragg could re-internalize in pleural space. Hopefully won't be needed!
Hopefully this just wont be needed but I like to know details so was curious what she thought and given so many chest tubes where needed with both prior open heart surgeries (albeit different valve replaced) I am more or less just curious what she thought/thinks.
I'll be sure and ask my Heart Surgeon and Cardiologist and Anesthesiologist their thoughts to on this prior to the Heart surgery in Jan. - from Dr.E's (my Cardiologist) note it seems he thinks similarly, that it would be externalized and down the road Dr.Bragg's Team could put it back in the pleural space.
As far as why are headaches worse in the morning and get better as the day goes on Dr.Bragg said Spinal Fluid pressure is highest in the mornings and decreases as the day goes on so this likely explains why I feel worse in the mornings and improve as the day goes on. Frustrating!!! Perhaps most frustrating of all is the mixed up/feeling like I can't comprehend things normally though this is much improved, (seriously compared to a wk ago it is hugely improved). Vision is a little improved (other than writing is still a little off), reading is crap (I can enlarge my phone thankfully) but can't really read a book which bites big time, I love reading!

I am very grateful we have the 2nd shunt back in place but have to admit this past 2 wks has been a little frustrating with trying to sort out how to best get on top of these symptoms! It was even almost like when we had the shunts turned higher that the shunts drained better but this caused the weirdness/off center/off my normal thinking feeling-like I couldn't organize my thoughts or quite think normally. Yet we have them set at the bottom which drains the most and man the difference in that 1st hour yesterday (Weds) was like HALLELUJIA but the shunts don't seem to drain as well (Or really I think it's more they seem to drain, probably vents collapse, pressure builds, drains, ventricles collapse, pressure builds-forcing ventricles open repeatedly so not continuous headache (pressure) relief. CRAZY is what these shunts are! I said to Dr.Bragg I don't know how she stays sane in her business having her work and often (atleast in my case due to the MPS complexity) fail, having to re-do it over and over and yet she's so sane and nice and down to earth! <--- Hopefully each day does con't to improve as it has =)
In any case as I've said before I am grateful she doesn't give up and she does view my care and issues as a Team effort-us working together to make it better!
On a different note, I can't remember if I wrote about it in the last post but the Anesthesia (airway) dr who has done all my prior open heart surgeries (OHS's) and both prior heart procedures in the past 2+ yrs sent me a message and she is working to try and coord. her schedule so she can be at either the appt with Dr.Mitchell (Jan 5th I believe it is off hand) or the pre-op Appt, which is the day before this 3rd OHS (Jan 20th I believe).
She like I feels we should have in place a better post-op management plan for after this 3rd heart surgery to include 1. how long they'll leave intubated/sedated (both for airway and for recovery) and for post op recovery-pain mngmt control. I am glad she is thinking about these things! I do not really remember a lot about the 1st initial days with the 1st two (especially the 1st one given I was sedated for the initial 3 days and intubated) but apparently it was rough so I think her having been there and thinking this through plus putting her voice in to this is a good thing!
Dr.Kovach, my Heart Rhythm dr, (is in the same clinic as Dr.Earing, my Cardiologist) sent a message and said he would stop by sometime after the OHS while in-pt but was curious to see if HR would slow down with this surgery and with taking stress off the heart having to work so hard. He said his stopping the Ivabradine or not would depend on how heart rate did with this surgery. So it appears he'll stay involved and atleast there is a plan there to.
Next wk is a busy week with appts and other things going on, f/up appts and things at Church so hopefully this weather stays nice - I LOVE it!
Thanks for stopping by,
Erica

3rd OHS Scheduled.. Thanks but no thanks to OHS before Christmas...

**So the 3rd OHS is scheduled for Jan., 21st with pre-op scheduled for Jan 20th and I asked to meet with Dr.Mitchell, (my Heart Surgeon) ahead of surgery so that is scheduled for Jan. 5th. This is all at Children's Hospital of Milw. **

What a week (or couple wks?) - Whew this last surgery has both been sooo good and yet so befuddling In how it's seemed to mess with my brain! I do still get headaches but these are not as bad as they where prior to surgery which I am grateful for! This said my vision with typing this and if I try to read (I haven't even bothered with trying to read a book which makes me a little sad!) I just feel so out of sorts and is driving me batty!
Last wk our turning down the VPL Shunt 2 notches did help with the headaches and with the foggy brain/feeling off centered but at the same time I have to say this is still so there and keeping me feeling so weird feeling. Gawd I hope we can figure this out! We do have 2 more notches to turn the shunt down which I talked to Dr.Bragg and she was more than fine with our doing (she had told me as much last wk to).
I talked to her Secretary, Dr.Bragg was going to be out of the office this wk other than today, Dr.Bragg offered to try and see me today in her clinic but I can only do Infusion certain days due to the length of it and is hard to reschedule so I am working with her Secretary to see her 1 NP and have Emily re-progam the VPL Shunt on Weds.
I think turning the VPL Shunt down last wk helped but have to admit I have just never had this type of symptoms so while I know it's pressure related I am a little baffled by this all! Vision (like trying to read or trying to type this) is nothing short of frustratingly getting on my nerves! I am way behind on seeing the Eye dr (lol, something my Primary dr mentions every time I see her in the past yr) so infinally made an Eye Appt that is in 2wks. Maybe I just need stronger glasses but a little weird, if that is the case that it occurred right after this last shunt surgery. That all said reading Dr.Bragg's and the General Surgeon's surgery notes the surgery was nothing short of tedious it seems to get the new (VPL) Shunt placed. So who knows?

Heart surgery wise, Dr.Mitchell, my Heart Surgeon drs. Secretary called today and they have talked to both my Anesthesia dr. (Dr.Taylor, airway) and to my Cardiologist (Dr.Earing) and while I do want to feel better I did laugh and politely decline their offer to do this MVR replacement already the end of next wk. I am thinking they must have thought I'd opt to take the surgery date they offered next wk as the Secretary offered it to me while also adding 'You can decline and we'll pick a new date'. I did turn the date down politely and Lori, in turn talked to my Cardiologist and Anesthesia drs Team and came back by this afternoon (Monday) with new options. Perhaps some Patients would want to feel better that badly and not mind the risk of being in-pt for the holidays but I have so many things I want to do yet before Christmas and frankly have just spent to many prior Christmas's in recent years (2 of the prior 4 or 5) in-pt so I really, really want to try to avoid this one being in a hospital! Just need the shunts to last!
While it would mean missing less of my Sunday School class had I taken the OHS late next wk I have to many things for Christmas celebration planned with my SS kids and our program in the next couple wks. and with family. So Lori (Secretary) talked to Dr.Earing and coord. a time in Jan between his schedule and Dr.Mitchel's so they are there for surgery together. They also coord this all with Dr.Taylor for a time that works for us all. Yippe, skipee (note sarcasm).

Now to just keep both shunts working!!!!!

Stay tuned, never seems to be dull on the MPS front (I would take dull, it would be alright..).

Say a prayer this shunt/oddness improves/goes away!
Thanks for stopping by,
Erica

Turned down VPL Shunt, Former Airway (Anesthesia) Dr on board (3rd OHS)

I've not yet heard from Dr.Mitchell, my CV (Heart) Surgeon ofc but I also know it takes time. I know Dr.Earing works ALOT faster than most Dr's offices!
I know scheduling wise the Team is looking at Jan or Febr and I did hear from Dr.Taylor,  the Anethesia dr. who has done both prior OHS and both prior heart procedures.

She has reviewed my Cardiologists notes and
 is going to talk to the Team and coord. timing so I am relieved she's willing to do the Anethesia for this surgery to.. It takes stress off me knowing I'll have a Dr that's familiar w the airway issues to in addition to my Heart drs. have seen my Heart before in surgery.

Perhaps it sounds odd to be more concerned about the airway issues but I do feel more relieved w most (all?) surgeries or procedures when there's an Anesthesia Dr on the Team whose done surgery on my case before.

I had a post op Appt today w Dr.Bragg in which she told me not only was there 7 (or maybe it was 8) incisions, and sone funny conversation related to this, the General Surgeon and how rough my skin is to get shunt catheters through. 

I had to laugh when we where talking about the surgery, her and the General Surgeons response during!   Our skin with MPS can be unusually tough although most often it does soften once those of us who receive ERT start it. For whatever resin in my case this seems to either never have happened or has reversed itself as Dr.Bragg talks about w lost every surgery how tough the skin is to unnel catheters  through on order to place the shunts.

It seems I was also wrong about what setting the 2nd (VPL) Shunt was at.
As it turns out (and probably explains my damned  confusion /scatterbrained/feeling like I was literally losing my mind this past 2 wks) the VPL Shunt was set 4 above the bottom (but after surgery pressure was  to low so I had asked for the shunt to be set higher temporarily and while still in-pt we did turn it down 2   settings) so in fact yesterday (Thurs) we actually where able to turn it down 2 settings and Dr.Bragg said we have 2 more settings we can go down if needed. That made me super happy!
So at today's (Thurs ) appt Dr.Bragg turned the VPL Shunt down 2 more which definitely has already made a difference in my feeling like I was just danged confused about stupid stuff! In Madison today I needed to stop at 2 stores and I literally had to turn around no less than 5 times trying to get some place even though I knew where the store was! I backtracked, would turn around, back track some more. It was almost funny albeit super frustrating bc I knew where I needed to go but couldn't figure out what exact way I needed to take - this to places I go frequently!

Dr.Bragg did say  if I felt I needed it to let her know and she'd turn the shunt down the final 2 settings. I am glad she's willing if needed!

The only down side to this shunt (draining to pleural space)  was I already was getting a semi persistent cough the past few days by mid/later in the day day and can tell it's a little worse today. THAT is going to suck if it cont's during (after) the OHS!

As far as the up coming OHS and the VPL Shunt draining to the pleural space, my Heart Team/Dr.Bragg being are w it draining to lung space.  Dr.Bragg said part of this was they felt there was only a small chance they'd need to put a chest tube in on the R side and all where happy this shunt seems to be working so well so if needed /if they did end up needing to place a chest tube in that R sided pleural space during the OHS, the shunt cathether would just be externalized at that part of the shunt temporarily. I guess Dr.Bragg would re-internalize it later.
I amniy entirely sure how that would work given she's at a different hospital /different city but will ask her. I am hopeful this won't happen BUT if it did I am glad all (Dr.Bragg, Cardiologist and Heart Surgeon) are at least on the same page and I guess would talk to each other then to sort it out..
Will update when I know a surgery date,
Thanks for stopping by,

Erica

Cardiology Appt; Moving ahead with Mitral Valve replacement (3rd OHS)..

Do you ever have a hunch about an appt before you go? I have sort of felt in the past wk especially that today's Cardiology Appt was going to end up with us moving ahead with this MVR (open heart surgery).. Oddly enough, although I had this feeling I also kept thinking to myself, well maybe b/c I feel so about this, maybe it in fact will end up the Echo (heart ultrasound, takes pictures of heart valves and structures) will show improvements? LOL, oh so naïve am I... Believe me while I kind of hoped it would show improvements (no real reason it would given Mitral valve has continued to worsen slowly but steadily over the past 1-1.5yrs) I also kept thinking, well the last time we put 1 of the shunts to drain to the pleural (lung) space, a few wks later we did a Echo (just happened with timing, wasn't on purpose either that time, 2.5 yrs ago or this time) showed the then moderate-severe aortic valve was in the severe range. Now 2.5yrs later the Mitral valve is in the severe range.
For whatever reason God must think I am pretty bad ass and strong or something (I am 1/2 joking) that he'd give me this mitral valve challenge not 2.5yrs after I went through not 1 but 2 open heart surgeries to take out and replace the Aortic valve and to enlarge the aortic root?
Non-the-less, challenge accepted and I know whatever God's intent he is with me every step of the way and I am not going to question why he does the things he does nor when. I am instead grateful that God has given me the faith I have in him, even if it is shakeable and sometimes (probably) a questionable faith on my part.. I am grateful God has given me the Team of Providers (purposely capitalized those 1st letters) he has, that he has placed these Providers in my life and that God is with me through each and every struggle, storm and good moment I have..

Per today's Echo the Mitral valve had again worsened, which this is the 3rd time within a year the gradients have changed. Dr.Earing, my Cardiologist commented they could not get a reading (or good reading?) of the Tricuspid valve measurements and I think there was 1 other area though that I cant remember for sure. The Pulmonary Pressures where already high/increased back in summer so none of it is a good sign nor good for me in general.
He commented, if it where any other Patient of his, he'd have recommended a open heart surgery-valve replacement already a year ago but given I have so many other complicating factors (lung issues/breathing, joint issues/arthritis type issues, the autonomic issues and endocrine issues + the headaches he wasn't in a hurry to go to surgery as 1.We don't know what of your symptoms this will help, though I do think we need to do this'. and 2. 'I know you would tell me when you got to a point you thought we needed to do it and symptoms where to bad, I trust you'. (my paraphrasing). Heart rate today was unusually high compared to how it has been though no real good answer why that is. I am hopeful once this MVR is done and things stabilize, given they keep heart meds for awhile if they in the end would decide to keep anything that they would keep the Ivabradine over some of the other heart meds but we'll figure that out as time goes on. Heart rates in general have been improved on this med, minus today and some days. It hasn't really helped overall breathing/heart symptoms but I have to say in general having a even slightly slower heart rate has been nice!
Timing wise, Dr.Earing has already talked to my Heart Surgeon after I left today, the same dr. that did both prior OHS (with this one I plan to ask more questions and have a better plan in place, have asked if I can meet with Dr.Earing, Dr.Mitchell and with Dr.Taylor the Anesthesia dr. if she is able to do my surgery before the OHS day so we have a better plan in place for after). - I know last summer when Dr.Taylor did the anesthesia for my Heart Rhythm Study and Heart Cath she said to me she wondered if we did end up having to do a 3rd OHS if we should follow a longer intubation/sedation after any surgery and would that make recovery in the initial days easier than it was after the 2nd OHS (1st OHS initial days where easier than was the 2nd OHS though I admittedly don't remember it well). After the 1st OHS they kept me sedated and intubated for 3 days and after the 2nd one they extubated after 24hrs. + was a much more difficult initial recovery.
I am not sure but want to make sure these sort of things are ironed out ahead of time and a plan in place.. I'd also like my Heart Surgeon to talk to me atleast once after the surgery, I feel like you get the best information regarding a surgery a Patient has from the Surgeon who does it..
As far as the actual surgery goes we have time to plan so are likely not looking at doing the MVR replacement till Jan or Febr. after the holidays. This in order to give everyone time to plan and get the best plan in place. Per Dr.Bragg who I got a message from late this afternoon, Dr.Earing had already called her (I knew he was trying, Dr.E's Nurse Jane had called me re what to do with my Coumadin dosing for this wk as the level was pretty low despite being back on it for over a wk. and I'd forgotten to ask them what to do a the Appt.) Jane in turn after telling me what dose to take for this wk and when to re-check again asked for Dr.Bragg's #/best number to call (I hadn't thought to give it to them but gave her Dr.Bragg's Secretary who is amazing) and he must have called her right away and reached her.
They in turn must have talked and Dr.Bragg said Dr.Earing had already talked to my Heart Surgeon who felt we wouldn't need to move the VPL Shunt for this OHS. I admittedly am surprised by this but also happy! I am going to talk to Dr.Bragg more about this on Thurs at my Post-op f/up but if she's comfortable that is great and takes 1 complicating thing out of planning the OHS/getting it scheduled as we'd otherwise need to schedule the VPS move, wait a month after that then do the OHS.
Dr.Bragg also said in her message we could turn down the VPL Shunt at the f/up appt which I think will be good, my scatter brained-ness I am hoping is just bc pressure is a little to high! Today for instance I would be driving and kept thinking I was going the wrong way or in fact 1 time did follow a car the wrong way which not a huge deal, just meant back tracking but seriously! This on a hwy and route I have taken hundreds of times in the past 11-12 yrs! This or like figuring out what time I need to leave to get some place, I literally, no lie but have looked at my phone and alarm and reset it atleast 1/2 a doz. times last night and then still looked at it 2-3 times this morning figuring out what time I needed to get ready and leave. I mean seriously, how stupid but also almost funny bc it IS so stupid! My brain is like up and left the building 1/2 the time!
Anyways so regarding the OHS for the mitral valve I should hear tmrw (Weds) I guess or this wk and can decide when I want to do it. Definitely not before the holidays and most likely Jan or Febr. This means having to get someone to teach my Sun School class for a few wks but i'll sort this once I have a date picked out.. Apparently Dr.Earing wasn't aware I still teach SS as he said to me something along the line 'I didn't know you worked with kids, I'm not telling you not to do it especially if you enjoy it but the germs especially in your case aren't insignificant', lol. LOL =)
Dr.Earing when talking about the continuing, fairly fast progressing changes on the Echo and how unusual my valve changes/appearance are commented how he still wonders if some of my heart/heart valve issues are an Ehlers Danlos/Connective tissue dx in addition to the MPS and commented while he wonders this he has never seen my particular valve issues in any other of his (many) EDS/Connective tissue pts. but noR has he seen my particular valve issues in any other MPS pts. He was glad we're doing the gene testing although cautioned (which I already know) how much time this can take to get answers give it is a research study. To that I just said if it eventually gives another answer, great and if not we've not really lost anything. What matters is we just do our best to treat the issues as we can..

Otheriwse I am not sure what this MVR replacement will mean Coumadin wise. I think if I am not mistaken it means having to do Lovenox/Heparin injections anytime we'd have to go off Coumadin or anytime INR (blood thinner level) is low but I am not entirely sure and forgot to ask. I have to recheck INR on Monday so will ask Dr.E's Nurse, Jane then when they call with the new level. I know in some cases pts. have to bridge before surgeries or do other measures so I am a little curious.
Will update when I know anything further,
Thanks for stopping by,
Erica