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,

1 comment:

  1. I can't really speak to any of the medical issues other than to say, good luck! As far as the circumstances around losing your "friend", I can see how that could make anyone upset, but I think it might be presuming much to assume that the lack of response has anything to do with you or that you are the "bad person". Many times people get locked up in their own anxieties that they shut people out, there could've also been a situation within the church that cannot (or doesn't want to) be shared, even with church "friends". There have been many times where I've put far too much pressure or expectation on friendships, not saying that this is what you are doing at all. I agree friendships are a "two-way street", but what I've learned is that I should not expect to get something the other person can't give, be it at that moment or ever. We are all juggling a bunch of personal "connections", and can only allot so much time to each one, and sometimes people bite off more than they can chew. Making any sort of connection with someone, no matter how small, is a blessing and a great opportunity from God. On the unrelated note, as if I haven't written enough, I think in some ways it does matter how others manage their disorder, because we derive personal inspiration or disparity based on how we observe others have overcome or been defeated by a similar situation. I do believe there are people that use their condition as a reason to be lazy, and it does affect others sometimes, especially in the "entitlement" benefits debate. But I agree, we can be our own worst enemy, and do need to focus on what we can do, not what we can't. Okay, I definitely talk to much.