Wednesday, October 22, 2014

Shunt revision rescheduled

It's hard to believe I am writing this and although I tend not to believe in bad luck perhaps the other week I jinxed myself when I wrote something to the effect of: "Dr.Bragg is out of the office studying for her final board testing but said she didn't have a problem doing the VP Shunt surgery while out".
Perhaps I jinxed it by doing yesterdays Pre-op Appt. (?) or perhaps I just feel like it's one of those things that oh so elusively out of reach (relief)?
I don't know but what I do know is that this sucks and honestly I'm probably going to worry between now and the new surgery date (Nov 20th) that Dr.Bragg will change her mind or doesn't believe me or something. Maybe it's an irrational fear but non-the-less when you don't really know it is for me a fear.

Perhaps that all sounds silly but when you've had the past experiences I have with Neurosurgeons I don't think you ever quite stop worrying when will this one stop believing and leave to? Silly I hope but non-the-less a worry of mine.
When I saw the missed call from my Nrsgns Secretary earlier I think my heart just momentarily stopped, I just had a funny feeling it wasn't going to be a good reason. I called the Secretary back and sure enough Dr.Bragg wanted/needed to reschedule surgery from the 30th (next wk) to later in Nov.
I had thought the reason surgery was delayed this 2 wks now was due to her taking her board testing sometime in this interval (but thinking about it now remember her saying something about it being in Nov.) and so I am not sure but think she was just doing very part time practice between when I saw her a few wks ago and now and then next week will be out for good? I don't really know.

After talking to her Secretary, Anna went back and talked to Dr.Bragg who was willing to con't on with the surgery next Thurs. but all f/up care would have been with her partner. Anyone whose been following this or my previous cb site for sometime knows my experiences with her partner have not been great ranging from flat out accusing me of being a "drug seeker" to comments along the line "I'm glad she wound up with you" (when rounding on a wknd day for her); believe me there's a reason I walked out of the one and only appt with this dr.
The only appt. I've to date ever walked out of AND I feel it is my gain to have Dr.Bragg as my Nrsgn - she is good at what she does and I think works well with my other Providers. She has believed me when I know there are many times my symptoms are less than classically presenting and though I never stop really worrying about her giving up I feel lucky to have gotten her on my Team due to her caring and persistence.
I know her partner is a good Neurosurgeon and several of my friends have kids who see him and they really like him which I am happy they have good working relationships. I would never say this dr. is a bad person just that we don't mesh as Patient and Provider and I feel heads and toes more comfortable with Dr.Bragg who has never discounted my symptoms or what I might feel nor accused me of making up symptoms. I think some drs are (my opinion) just better with kids and some are just more able to do both kids and adults.
It's also on my part not a male vs female dr. thing as several of my other Specialists are male including my Cardiologist and we get along well. In my Cardiologists case we are 2 headstong, stubborn people who have worked well despite our not always agreeing nature.
I write all of this here as with many things I write a bit apprehensively as I don't obviously know who (or even what Providers) may read this and I worry a bit it may offend someone and that definitely isn't my intent.
The reason I share it is b/c it is my experience and this all above plays in to how I feel today as I was deciding whether to do surgery still next wk or as much as it kills me go with surgery in a month. =/ I am guessing Dr.Bragg's Secretary probably thought 'holy cow' when I talked to her as I was in tears and upset (not angry upset, just upset) trying to sort out what to do.

Due to Dr.Bragg being there I've opted to reschedule surgery to the date later in Nov., I think it may be a long 4 wks between now and that surgery date but I am not very comfortable with post-op being under someone other than Dr.Bragg who is familiar with my care.
I bounced the thought off my Mom (who acutely remembers past experiences) and some friends and just decided since Dr.Bragg is so familiar with my underlying, potentially complicating issues i'll wait. Do I wish it was tomorrow or the as before scheduled next Thurs yet? Absolutely!
Pre-Op from yesterday should still carry over to next month so the only thing I can think of is INR testing which I imagine i'll have to get done the day before. Anna, the Secretary was going to place the surgery as the "1st case" so hopefully that will remain true and we manage INR the day before by outside testing.
To sign off I'll leave with this quote I came across on fb today:
"Hiding sick is very easy when your life is always being invaded by pain"
I wish more people could understand this; not all of us regardless of how we feel curl up on the couch as we have things we are responsible to and so you instead modify your life or plans.

Tuesday, October 21, 2014

Pre-op Appt, VP Shunt Surgery Thurs. 10/30

Today's pre-op Appt went well, nothing to special. The Appt was with my actual PMD(she's very part time but her nurses will add me on to her schedule) so went relatively quickly. We where able to use labs we'd just done several weeks ago so not much had to be done.
EKG was done at my Cardiology Appt last wk so that to did not have to be done. As far as the cardiac symptoms/breathing issues she just commented she'd have wanted a Cardiology consult had I not just seen them (she sent me) and so she was glad we didn't have to try to get that done in time.
Med wise unless Cardiology says otherwise (PMD was going to call them after the appt.) and unless Dr.Bragg/her office would say otherwise before next Thurs's surgery i'll stop Coumadin which is the blood thinner 3 days ahead of surgery. Med wise i'll take Lasix and all cardiac meds the morning of surgery (to prevent heart-fluid overload) though she wasn't certain about the baby aspirin. She feels it should be taken but is Cardiology's call.
In the past as far as knowing if the blood thinner was in-range for the day of surgery Dr.Bragg has done several different approaches from my being admitted to the floor the day before surgery to having me come early the day of surgery and doing labs several hours before at her hospital. The plan this time is admit the day of surgery and I assume just check INR in the 2 hr window between surgery check in and going back to the OR. I assume if they want something different they'll decide between now and then.
Weds. i'll be in Milw. and since it's just easier i'll have my Infusion nurse access my Port (vs leaving it accessed after Monday's infusion and then having to change the dressing when I shower each day leading up to Thurs.) so that is done and no need to convince Anesthesia or a Nurse to access it vs. starting a peripheral. My infusion Nurses real jobs are on the Access Team at Children's so it works out well; typically they will just add me to their schedule, i'll come in and takes about 15-20mins. Having the Port accessed before I come in saves a lot of frustration the day of surgery as Anesthesia usually is against accessing/using the Port and honestly even this way sometimes they only way they'll use it is if Dr.Bragg asks them (she has seen multiple attempts at peripheral IVs).
As far as ERT since surgery is on a Thurs., I may be out in time to get my normal infusion at CHW but per an agreement/arrangement with UW's D6-4 Neurosurgery Pharmacy I call and give them a heads up anytime i'll be having surgery so they can order the enzyme drug to have on hand. This way if I am in-pt I can won't miss. I've not yet called to let them know but the Aldurazyme then gets mixed by the Pharmacy and infused by the floor Nurse(s) using a slightly different ramp up rate than we use at CHW (for whatever reason it runs at a much faster pace if we use the ramp up rate I normally at at CHW so one of the Nurses had re-calculated their rate and works well).
As far as surgery I am just praying we figure this out, that any occlusion would be a simple find/fix and if need be Dr.Bragg works down the entire shunt system to rule out it isn't further down in the distal end. I trust her though and know she'll do whatever she feels is best.
I guess if there's anything else i'll update otherwise surgery is next Thurs. the 30th.
I've attached below a few copies of my Sun School kids at the end of class the past 2 wks. I typically take pics for various Church purposes and then make copies for the kids/their parents which the kids seem to really like having.
As difficult as mornings are these days (I feel quite out of sorts actually and in a zone sort of) I try to get up a bit earlier on Sundays so some of the symptoms are atleast partially worn off and honestly my kids are pretty easy going. I've also figured out how to teach without having to do a ton of actual talking the entire time.
In any case thanks for stopping by,
'The Passover'

'Moses leads the Israelites'

Wednesday, October 15, 2014

VP Shunt revision date, Cardiology Appt.

The VP Shunt revision date is set for Oct. 30th - pre-op Appt is set for next Tues.
While imperfect that the surgery date is further out and you might ask why (Dr.Bragg is out of town I believe for her board certification testing one of these wks.) it also isn't as bad as if I only had 1 shunt and that wasn't working optimally. Given I do have 2 shunts and the TPL Shunt (Thoracic to Pleural draining) is working well and we rarely have issues with it I do atleast have some CSF getting drained and headaches (and associated symptoms) while less than fantastic are also not as bad as they would be where I to have 1 shunt and it where malfunctioning. That said believe me I'd still take a drill and drain the fluid myself if I could at times..

I sort of had to laugh at yesterday's Cardiology Appt., I think Dr.E knew my PMD is who asked that I talk to his Nurse and make an Appt. with him but initially he was like (my paraphrasing) "I really don't think this is solely a cardiac symptoms as you have a lot of co-factors going on that inter-play and could be causing your new symptoms".
I kind of looked at him and just said 'You do realize that's why I talked to my Primary dr. first right?' LOL, I really like my Cardiologist but sometimes he acts more like a Father figure than he does a dr. with the 'know-it-all-ness' but then again he is a Dad to a bunch of girls so probably explains it. I know the 1st time I met him 10ish years ago I thought he was a little arrogant (but seemed knowledgeable) and i've come to figure out is just that he cares though he can initially come off a little brusque. If you don't know his approach well I could definitely see some pts. being offended; his personality is something of a joke (not a bad one) amongst his pts.
As far as what does he really think is going on? He commented from having read one of Dr.Bragg's more recent clinic notes (they are not at the same hospital but both practice out of the 2 Children's Hospitals in WI) that he does not think our cardiac issues would impact/influence the headaches and he does not think an issue with oxygen getting to the brain is the cause of the H/A's. His thinking if I remember right behind this was 1. The aortic valve is working well now that it is fixed and 2. the Mitral valve has less of an impact on this area (but definitely don't quote me on the 2nd part).
I obviously don't know and all I know is the aortic valve is functioning well post-the re-replacement last Fall and the Mitral valve is at the edge between 'we can wait' and 'we'll have to intervene' but he is hoping we can wait as long as possible.
As far as symptoms he had a few thoughts but really didn't want to adjust meds as he is concerned I am already on quite a few (5 different cardiac meds in several different classes to be exact) at relatively high doses and is concerned any dose adjustments would "upset the balance".
His 2nd thought is repeat the breathing tests as it could be related to the restrictive lung issues (same symptoms prior to the aortic valve replacement/re-replacement so seems less likely but anything is possible) and asked that I use the inhaler (Xopenex) I have more routinely (I have it but never use it now) and especially when going to be active.
3rd. Instead of repeating the Echo in March at 6mo's he is repeating it in Dec. (the day before I fly out to the Disney Conf. actually) and f/up with him after. If anything changes or new concerns between now and then let him/his Nurse know.
I personally think these symptoms are cardiac, basing them off of how I felt prior to the aortic valve replacement and how I've felt over the past few weeks. How I can sleep 8 hrs or I can sleep 12 hrs and I still feel pretty much exhausted. The weird sweating (not as bad thankfully) which I think is autonomic and impacted by the shunts, the breathing and intermittent but frequent heart rate changes on top of the intermittent blood pressure changes. That all said I also know I went like this for a period of a year or two before the aortic valve got to a 'severe' range so it is quite possible this mitral valve will stay the same it is to for some time to. This would be fine b/c I don't really want to go through another heart surgery and all that entails although at the same time I am amazed in the last few wks how little I noticed the seeming energy improvement after the 2 OHS last yr. until it just wasn't there anymore again these past few wks!?
I guess on a positive note since I had to be there the NP whom followed my care both in the hospital after both OHS and then for 6mo after during each cardiac f/up stopped up to say 'hi' today. Normally Dr.E's Nurse Jane does pre-appt vitals, med check, etc. but Nancy did so today, just to check-in which was nice. I might add both are extremely nice and easy to work with though. =) Nancy and i've talked on the phone a few times (INR results) since she hasn't really been closely tied to my care since last March but otherwise we'd not seen each other and so was a nice surprise. =)
Un-related to the actual issues I was there for but something Dr.E has brought up before, he brought up how easy it has been for them to work with my primary insur. to get approvals/authorizations. Cardiology like Dr.Bragg is an out-of-network Specialist exception and so my Insur. Nurse Case Man. when our Insur. had 1st switched to a HMO a couple yrs. ago got Prior Auths. (PA's) in place which cover certain care and tests in addition to the drs. each for 1 insur. benefit year at a time. In the case of Cardiology they apparently have other pts. who also have Dean Insur. and must have a fair bit of troubles getting PA's approved for out of network tests, drs., etc.
Dr.E has commented several times over the years maybe they should just have me doing the paperwork for them (lol) but really for me it's just been a matter of being persistent and involved, sometimes pushy to get things done though my C.M is a huge help to!
I personally think patients have to be informed of their benefits (what coverage they have) and almost more importantly request a Case Manager be assigned to their care as that 1 person is then your entire point person for ALL Insurance questions or issues. I know my Insur C.M works with my Genzyme Insur. (drug) Case Manager when it comes to questions on that end, and with the Neurosurgery fl. staff from time-to-time and has often been my go-between for the Medical Director at Dean when issues have come up.
Somewhat jokingly (and yet it's true) I commented that as much as I often hate asking questions I am not afraid to push for and ask things when I am not sure and that to is important in getting the care and coverage pts. need. He smiled, laughed and agreed about my not being afraid to ask questions either right away or later on. I think all my Providers know my hesitancy but also know I'd rather be informed than mis-informed or not understand and I'd rather as much as possible get things done on my own.

In any case no earth shattering news, and nothing exciting (which is ok).
I'll update again when there is anything,

Thursday, October 9, 2014

Peds Neurosurgery Appt (surgery being scheduled), Cardiology issues, etc.

I apologize ahead of time this update has kind of a lot going on as it's been an on-going post in progress.
I saw my PCP yesterday (see below) and my Peds Neurosurgeon (Dr.Bragg) today.
At today's appt although I can't really explain why (but I've felt like this the last few times) I was fairly nervous and a little uncertain how it would go. Thankfully overall the appt was good and Dr.Bragg seems to have thought about this all some as she is opting to go in and explore the VP Shunt (we rarely have problems for whatever reason with the TPL Shunt) and look at the valve + catheters.

She is technically in and out of the office a lot over the next month or so as she is studying for her boards (certification in neurosurgery) but sees some patients and just said she had no problem fitting me in to her limited OR schedule. She'll talk to her Secretary who will call me with a date and time.
Somewhat ironically this won't be the 1st time I've had surgery with Dr.Bragg when she has technically been on a limited schedule; about 1.5yrs ago she must have been studying for some other test as she wasn't really seeing patients but still did a shunt surgery then to.
In that case it was post a shunt/central nervous system infections and we where putting the 2nd shunt back in.
In any case I am grateful she's willing to look in to it, as much as I really don't want surgery I also hope we can figure this out. If needed we'll change out the valve but stick w the same type (Codman Hakim) as while it's not been perfect it is the best we've found.
I did ask her if she thought it might be the distal (tail end) of the VP Shunt could be malfunctioning or not draining right and she commented in a case like this opening pressure on a shunt tap would typically be increased but then she also commented it is sometimes possible a problem is occurring and the CSF (spinal fluid) finds another place to pool/collect.
If it turned out not to be the VP Shunt (ie one direct exploration it seems or looks to be draining well) then she is concerned the headaches and symptoms are a direct correlation to the increased cardiac-valve changes and issues and is her opinion the only way we'll improve the headaches would be if the mitral valve where also replaced. I think if needed she'll talk to Cardiology after this surgery (but hopefully it will be a semi-simple shunt issue).

Yesterday's appt with my Primary dr (Internal Med) went ok, she had asked me last wk as we exchanged messages via MyChart (patient/provider portal) to make an Appt with her but to also give my Cardiology Team a heads up regarding the newly changing symptoms I was/am experiencing.
I did in fact talk to my Cardiology Nurse on Monday as she calls w the INR (blood thinner) result post-testing (done from ERT Infusion) but I did not mention the changing symptoms. Honestly I am just tired of drs. new symptoms and issues.. It was clear at today's appt my PCP got it but still asked that I call them tmrw (today) after she would send me her lab results later Weds night. She'd really like a new Echo to be done (it's only been about 3 wks since the most recent one) as she is concerned something has changed in the Mitral valve or she wondered if med doses needed to be adjusted.
I did leave a message with my Cardiologists Nurse/the ACHD Nurse (NP) line (same line) so we'll see I guess..
It's not that I don't like this team, just that I feel like a pain in the arsh! I wish I didn't in fact feel like I was cray-cray and could get over the slight anxiety I feel having to repeatedly ask Providers for help?!?
As my PCP said, along the lines of "We all know you have complex issues, while your post-OHS recovery was good it didn't exactly go as expected (referring especially to the sudden mitral valve changes once we got past the un-expected repeat open heart surgery) and we all understand it isn't simple" (or something along that line).
Ironically Dr.Bragg and I where talking about this same 'having to repeatedly ask Providers for help' conundrum and how much I hate it and never get used to it. She to commented along the lines of "I don't know how you/patients do it, I can barely get myself to call a dr. once a year" (funny given she is one). I guess when anyone is reading this i'll likely have some update from Cardiology what they think.
I rarely write about none medical stuff here but this post is going to be one of those exceptions (with some appt/medical updates as above to). Although I don't really know who reads this locally I am going to go out on a limb and write anyways about a situation that has been bothering me..
The past few weeks have been nothing short of stressful as we've been sorting out some (non)-changes with Sunday School and the person who formerly kind of made decisions regarding teaching music, missions planning, group, etc. and decided they didn't want to participate this yr.
This is fine, we all go separate ways at some pt. with anything we are involved in although it really was great w the other person involved, I can't stress enough that they where good at it. Our problems kind of began though when we initially where debating changing up the entire SS curriculum (how it is done week-to-week) and considering trying something new.
I personally really like my class and kids and enjoy the curriculum we have now but was fine if we tried something else. In the end this person decided not to be involved at all so we the rest of us who are teaching and our Pastor who oversees SS had to decide on a few things.
We needed a new music teacher which I was able to reach out to a member of our Church and got this squared away, and a song and practice schedule situated for our Oct 26th service.
Secondly atleast for the 1st few months we decided against doing group SS as none of us really has the time to plan a group lesson for all grades (the former teacher did this last yr. and was good at it). So for now, till the end of Oct. when we have 2 Reformation Group lessons/video wks planned we've stayed with out indiv. teaching.
All should be fine right? We tried to get answers the best way we knew if the other person wanted to be involved and frankly she was good at it but couldn't really get an answer.
Instead now for the past few wks this same person whom I considered a good friend and one of the few people I felt like I could talk to about how I was feeling regarding med. stuff or things in general has not been speaking to me and won't answer phone calls or texts. After trying some I finally gave up and am no longer trying as friendship should be a 2-way street. This whole situation has really upset me though and I wish I understood why the other person suddenly decided we're not talking.
I don't really to be perfectly honest understand why I became the bad person in all this, other than I've learned if someone asks you to take up a cause for them, just don't. One thing I've truly learned is while I already really trust very few people i'll likely trust people I should that much less as it seems people who are un-happy take it out on others. It is all I can guess? This all does make me incredibly sad though.
I am not the type of person who has large circles of people I consider 'very close' as I am kind of a loner, happiest to do my own thing or instead spend time w/family or my nephew but I did enjoy when we'd get dinner or a few of us would hang out. I can totally see why some (clearly not all) people put up a wall and don't bother to get to know many 'friends' though.

On another un-related note, is it really anyones business what amount of time someone spends with their disorder (by that I mean if they become invested in learning about it, find a job within it and it becomes a part of who they are (versus ignoring and denying you have it)?
Sure there are definitely people who use what they have as an excuse to try and get out of things but it bothers me when people or Providers make comments like people are being lazy b/c of what they have (not referring to myself just a conversation I had). I instead think we as either healthy people or as a person who does have chronic health issues should concentrate more on our own feats and less on what someone else does or doesn't do and be grateful we can go on about our lives despite if we do have health issues OR if you are healthy be grateful you are healthy and don't have either health problems or mental health problems!?
In any case, sorry this update is a little bit of many things.
I'll either update this post with the surgery date or a new update once I know and same with what Cardiology says.
Thanks for stopping by,
God Bless,