Tuesday, January 5, 2016

Appt w/Heart Surgeon; Plans in place, details being worked out..

Oh Lol, going to start this with a good laugh (on my part) - Dr.Mitchell and I and his Nurse/Scheduling Coord. where talking about where the VPL Shunt is implanted (in back on R, parietal location), I was thinking it was still on the L side, valve with catheter crossing across skull to the R, running down to R side of chest to pleural space but in fact it is implanted in back and it does run down R side.
Anyways I say this b/c Dr.Mitchell as I mentioned above was asking about what side it was on and I totally goofed. Lol, I guess atleast I was semi right in where it's placed? I think I am so used to formerly being able to feel the reservoir and this one although apparently there is a reservoir on the shunt I cannot feel it and the shunt blends in well till it gets to my collarbone/runs down behind my ear. Just a stupid funny on my part. =)
So anyways as far as surgery goes, the plan is as I knew to use a mechanical mitral valve (also a St.Jude, same as the Aortic valve brand) although the 1 difference with this valve is unlike the aortic root where they could enlarge the aortic root making it possible to implant a larger size valve with the Mitral valve this is not an option so he said he would have to place a pediatric size valve.
I asked both about the Port (would it be ok in surgery) and he does not feel the MVR will affect the Port at all. The Nurse felt we'd be able to likely use the Port for one of the IV access sites (they typically then have to place a couple more peripheral IVs).
VPL Shunt wise Dr.Mitchell is planning to talk to the Peds Neurosurgeons at CHW to see what they think but as far as the actual Mitral valve replacement he did not think he would need to do anything in surgery that would directly affect the shunt.
His concern was more after the OHS is over and likely fluid collecting where the VPL Shunt is, which occurred with both prior OHS and he was as yet unsure if this would affect the shunt function and/or would they need to do anything with the shunt. Remains to be seen I guess, right? I have this question in to Dr.Bragg, does she think fluid building up around the heart/lung would affect the VPL Shunt? Atleast he is talking to the Neurosurgeons there and if needed my Cardiologist talks to Dr.Bragg often enough and can get ahold of her... I've been keeping her updated on this surgery and plans.
Dr.Mitchell talked some about the risks with this surgery but also how he felt we'd get through it and have a good plan in place. He brought up about the endocarditis (heart infection, I have to admit, obviously I knew it was treated as this after the 1st OHS and post the 2nd but never knew it was officially considered as an actual heart infection) and anyways he just said they'd do their best to make this surgery go smooth, to try and avoid any complications/infection or problems.
I have to admit I like him as a Surgeon and felt like he genuinely tried to apologize for some of the errors in the past 2 OHS, 2.5 yrs ago (not communicating well after surgery, the surgery having to be re-done) but I also feel like as much as those things made me a little frustrated at the time I DO know he's a VERY good Surgeon and I know to, clearly from today's appt he recognizes little mistakes where made on his part or things he could do better to make communication go better and that speaks volumes for me on his behalf..
I do not believe I should fault him for something that happened years ago when he clearly was apologizing today and on my part it's just not even a big deal anymore.. It's a little like my Neurosurgeon's Partner, I may never love the guy but I also don't feel animosity towards him as I used to bc while I would never by choice chose him to be my Nrsgn I do know he's good at what he does. Sometimes it's good to just move on.. And in the case of Dr.Mitchell he IS a good Surgeon and clearly cares.
One of the bigger issues Dr.Mitchell seemed to think he might have to deal with was scar tissue both in the chest from the 2 prior open heart surgeries and from the VPL Shunt/Pleural shunt surgeries. He said he expected this likely would take the most of his time to dissect and get rid of prior to being able also dissect and take down the current mitral valve and in turn be able place the new mechanical mitral valve(after they hook up the heart lung machine and of course prior to all that after they get a stable airway secured).
After all these many steps and some others (whatever chest tubes they need, pacer wires if they add them which they did with both prior OHS, etc) are done they then start the process to implant the new Mitral valve. Some scar tissue was removed back in Nov/Dec back when the VPL Shunt was placed by the General Surgeon working with Dr.Bragg in that surgery so perhaps that will/could help make this surgery a bit more smooth? I honestly don't know and remains to be seen I guess...I know scar tissue was one of the thins he mentioned would likely be a concern for him.
One of the other concerns he had given this is going to be my 3rd Open Heart surgery and I do already have issues with fast heart rhythm he commented he'd worry about the need for a pacemaker after this heart surgery and is some thing they monitor for during and after surgery. He said they can tell often coming out of surgery if the patient is in heart block (not entirely sure what that means but having to do with heart rhythm/conduction) and was something he said they monitor for in the 1st week post OHS especially and typically know whether one would be needed by the 1st wk post op or not.
One of the other things he mentioned and we talked about was before/after the 1st Open heart surgery there was a lot of talk about whether they should replace the Mitral valve right away to and apparently one of the Staff Cardiologists even wrote a note with concerns about this. I think she may have been a CICU dr., not sure. Anyways, Dr.Mitchell said had it not been for our needing to do the highly complex and very indepth already Aortic valve replacement and additional Konno procedure (enlarge aortic root, repair VSD) they would have went ahead at that time and replaced both the aortic valve and the mitral valve all in the 1 surgery. I understand why they didn't as the 1st and 2nd OHS where already extremely long (10 and 12 hrs I believe or maybe it was 8hrs and 10hrs?) but I remember my Anesthesia dr saying to me some days after the 2nd OHS how she'd had to very nearly replace my entire body volume in blood products during the 2nd surgery and just in general how difficult those 1st few days after the 2nd OHS where. I thankfully don't remember it but from things my Parents, Dr.Taylor (anesthesia dr.) and others have said to me.. For whatever reason it was in God's plan we do these 2 valves separately I guess..
I talked to the Nurse/Scheduler today about Genetics, about our working to get ERT for when I am in-pt and if possible how I'd prefer my former Genetics dr. at CHW not be allowed to make decisions on my behalf given decisions regarding my care when in-pt. I am working w the Genetics Nurse some re getting ERT for when in-pt so her I don't mind at all but that's just it she's working w/me. This other dr, isn't a part of my Team and I never talk to/see him. My real Genetics Team is in Boston and if anything I said to the Nurse my Cardiologist could get ahold of them though I'm not sure what they'd need Genetics advice for in general. In any case the Nurse I worked with today was going to work to make sure it was in place re the Genetics issue.. I really liked her!
To end on another note, to make me smile a bit. Dr.Mitchell asked me if I had any travel planned in the next 2wks before the OHS to which I said no, but I have plans to go to a Conf/Mtng the end of Febr. in San Diego. =) This is a mtng for the WORLD Lysosomal Mtng, something I've gone to the past few yrs for the Foundation I work for and is all drs and researchers/Health Providers whose focus is Lysosomal Storage Disorders.
This is usually a good mtng., a big plus is it's in warmer climate - this year San Diego again! I am hopeful i'll be up to the travel! I went to a Conf. a month after my 1st and 2nd OHS (would have been a month after my 2nd OHS, approx. 2mo after my 2nd OHS) in San Antonio so if this surgery goes well I think I can do it. =)
Anyways I think that's about it, hard to believe it's only 1.5 wks away!? Yikes!

Older update -

1st let me say I have to apologize for all the typos in my last blog - wow!  Yikes, sorry about that! I thought I edited it but was doing it from my phone partially and I guess I did not edit well!

I was laying in bed (on the couch lol) trying to fall asleep when I had been writing (the other day), knowing it was going to be waayyy to early of a morning w the early bird (Zan) sleeping over who gets up by 6:30-7 every time he's here (vacation doesn't much matter to him, he stays on his school wk schedule albeit that's even earlier I think).
Anyways I'm not sure why, I guess bc it's what I do when I can't sleep (?) and distraction from the headaches (worse at certain points of the day, have been literally all over the place, some moments really good and others Not.So.Much but I was thinking about the coming Coumadin changes, about Sunday School and the 2 Teachers that are subing (sp?) for my class while I'm (yes I know random and all over the place thoughts) while i'll be out.-I am hoping will only be a couple wks but anyways for whatever reason then was thinking about how the change in INR/Coumadin mngmt will (may?) affect future surgeries and this in turn I was thinking about surgeries and procedures  i've had in 2015. ..
This included (which sort of seems like a lot but was actually in some sense mild compared to some yrs)
-Heart Cath/Heart Rhythm Study (July)
-L Hand (3rd) CT releases/other nerve surgery- last Jan/Febr. (the R was done a yr or 2 prior to that, just prior to the 1st AVR/Konno surgery.
-This is a little fuzzy but TPL Shunt revision (Last Winter, I think? May have been earlier)
- Shunt Infection - (both shunts removed) -May
-EVD put in (when both shunts removed)
-LP Shunt replaced (May), 0 press. Valve
-0 pressure valve removed, Codman valve put in (a wk or so after 1st LP)
-EGD (Stomach scope ), May (prior to the EVD, Shunt removaslls/replacements).
-VPL (2nd Shunt) put back in (Nov) - imperfect but some better than 1 which I'll take.
-Lots and lots of shunt taps (but hey they don't hurt and they work so well!) =)
- Who knows if I am forgetting something but what a year!?
Not all bad though, I added a great Genetics Team in Boston,  I still work for GSF (love it) and I participated for a 3rd year  w/the Genzyme  Running for Rare Diseases Team - this past yr both in Boston and in Providence  (R.I.)

Definitely a year of up's and some downs, things I didn't really expect (heart!!!) and at the same time I have a Team of Providers who are pretty amazing.. I have a few who are outright exceptional and that I am beyond grateful for! Who as a Patient and especially a Rare disease Adult can honestly say they have more than a dozen Specialists and like every single 1 of them?
I certainly couldn't up till a year or so ago!
In addition this is my 3rd year teaching Sunday School and I honestly never thought in the beginning I'd love it as much as I do but I genuinely look fwd to seeing my kids each wk. I miss them the wks we don't have class (these past 2 wks) and I am grateful how kind and caring the majority of the kids and their families are!
I guess this post is what I was not feeling the other day? =)
For 2016 I'll hope (especially ) for a good outcome to this coming heart surgery. For (perhaps) better w the shunts but if that is not to be God's will then I know in the bad days or bad moments I am still blessed w a Neurosurgeon and her Team who truly care.
For my Parents I hope they are able to weather this upcoming heart surgery and it for them goes smooth so they not have to deal w unneeded stress. I pray they have strength in their faith and always remember God is by their side. I pray for Zan and for my Sister the times that are perhaps hard get a little easier and the good times remain in both their vision as the 2 mean so very much to me!

I also am on the Running for Rare Diseases Team again this yr, being partnered for the Boston Marathon which that is not till the 2nd or 3rd wk of April. I finally called and made the appt at Boston Children's with my Genetics Dr the Thurs before Marathon wknd.

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