Wednesday, March 23, 2016

Closer to a decision.. Now we figure it out

It hadn't occurred to me till earlier today and this is most definitely TMI (so not something I'm entirely comfortable sharing but I know others experience the same).
Really ever since I've had a LP Shunt I've had bowel movement issues, which required some less than ordinary thinking to sort out/at least be able to go (again like I said, TMI).
This issue had completely resolved when I started ERT (I used to get terrible stomach aches and intermittent (again TMI ) diarrhea for yrs that often occurred after I ate certain (many?)  things.
Well anyways after the MVR in Jan. it was like this just resolved again, was nice actually.  I didn't think to much about why it was but was definitely nice especially given other things where /are taking their good natured time! Ironically this was the same time period the headaches where getting worse again but didn't occur to me why it might (possibly) be.
Today/tonight  after Dr.Bragg getting a lot more CSF off the VP Shunt (amazing how I felt/ feel!!!) I kept admittedly wondering on and off today as I have for some wks (since the OHS really) is the LP Shunt working as well as it needs to be?

I know when she tapped that shunt some wks ago she got very, very minimal fluid off but she also thought it was probably bc the VP Shunt was draining more. I didn't think to much of it, thought perhaps she was right. Who knows she may very well be!? The reason I guess I wonder shunt is bc how bad nights are (literally waking up between 1 or so every morning and often awake for hrs w the pressure like feeling), the intermittent short term vision blurring (she thought this could be 'occular migraines'), there to maybe she's right though I  wonder if not the shunt bc it always occurs at times in the day where pressure is higher and then literally improves as I can feel the shunts kick in. These also never occur at times of day where I don't have the pressure like symptom(s). And this bowel thing normalizing so and that only ever occurs seriously every time  we've  either not had an LP Shunt in place or it turned  out LP wasn't working.
I don't know. The very intermittent vision  is very similar to the "migraines" I got as a kid right up to when i was 1st shunted but these are shorter lived (bc I assume pressure drains eventually).
Is a little hard to explain this one. I only ever get this when not enough pressure draining though and never get them at periods like Nov-Jan where it was really, really good. 
I don't think she's given up by any means, she wouldn't help in the ways she still does  but I do a little bit miss her in the beginning where she tried to rule things out or perhaps thought outside the box more. I am not sure exactly how to say what I'm trying bc like I said I don't think she's  given up, she still asks questions about my overall issues, she clearly cares just is more tentative perhaps? 
Heck it's not even that I want any surgery, I DON'T  I just want to feel better!!! To feel as good as I did for instance pressure/symptom wise going in to the last OHS. Yes it wasn't 100% perfect but we where oh so much closer and that was liveable.

So many around me would say to me they hoped that would last as they could see clear as day the difference. I can remember my Sister asking me if I thought that was the surgery (when we put the 2nd shunt back) that would finally work long term? I am more than sure I said I hoped but wouldn't hold my breathe as it doesn't matter who did/does the shunts, it doesn't matter we just have troubles keeping them working consistently really well (like full effect) long term.

I did finally ask Dr.Bragg some more questions today. There's many more to ask but I just wanted to ask a few today.
  Honestly  we'd been talking about her leaving and options for the past month or more now but I just wasn't entirely ready to ask to much or ask her opinion to much (wasn't ready to make a decision maybe, needed time to think about it all, definitely don't mean the above like I didn't /don't trust her opinion. I just in general need time to think about things before I talk to others or especially my Providers no matter who they are. ).
I am leaning towards 1 doc more than the other and wanted to verify if he had experience with the robotic /stealth machine Dr.Bragg uses as that was a big deciding factor.  She says he does so that would be good atleast.
I don't mind he is brand new, sure it means he has little to no real world experience but new docs generally tend to  think outside the box more, tend to be more familiar  (at least a little) with rare diseases like mine and (at least again generally speaking, I am hoping it's yhe case with this doc ) aren't as afraid to ask others opinions or thoughts. This is what I really, really appreciated about Dr.Bragg when I 1st began seeing her. She'd been in practice I think for like 2 yrs but still the new ones aren't yet jaded and get to know you as a Patient and Human generally before they do get so. =) Then if they do get jaded they know us as a Patient and human so it's like anything they feel isn't taken out in us or they trust us? Not sure but still I am OK w young docs.

Most of my Team where brand new or very new when they joined my Team and all currently on my Team are great! Of course as many know I've picked and chosen the Team I have now over many yrs and they are  at numerous different health systems (Children's in Milw., FMLH, Milw, Dean in Madison, UW and UW AFCH in Madison + My Genetics Dr in Boston.

I  cant say I am ready to start over, training a new doc nor do i want to start over with a doc. Can't change it though, right?
Just have to pray this doc is as good as Dr.Bragg is and that she'll let the new doc or myself contact her if needed and that the new doc is as caring or kind as she is?

We talked about lots of things today, not just about the docs switch (which is ok, that's a little depressing topic ) so I got some questions answered but she also said (and I agree) we have time to keep sorting this all out.
1 of my concerns which I didn't think to ask her is if we can set up a mtng with this doc, either before she leaves over the phone or at the very least can she fill him in on me and even though she'll already be moved to AZ by then (=/) the 1st day I see the new doc can she talk to him ahead of time  and he and I Conf. with her?
Many pts have what's called the Complex Care Team at UW which they can have help them transition to the new doc but I really have no one else there so am definitely going to be planning this as much as possible.
Trying to make sure we plan and have plans in place  so the new guy is familiar  with my complex history and if possible Dr.Bragg, myself and him can talk before he takes over my care. Can't hurt to ask and I think Dr.Bragg wants to help make this as successful as possible.

The NP from Cardiology (ACHD Clinic)  emailed me last wk both to let me know something was set up and  she wanted to let me know she'd  sent in the Cardiac Rehab referral.
More than that I'm her email she wanted to let me know this was her last wk in the ACHD Clinic as she accepted a position in-pt with the Peds Cardiology kids (also at CHW).
Her thoughtful and kind words re the impact I've apparently had on her, her learning about complex care and dealing with it and how this would help her in her new position really meant/means alot.
I'll definitely miss her being on the ACHD Team as she truly cared and was a great advocate + like many of my Providers really listened.  I felt comfortable telling her symptoms I sometimes feel a little intimidated telling my Cardiologist  (lol, I think bc I am stubborn, he is stubborn,  we're both opinionated and sometimes even despite these own traits myself he intimidates me)! Doesn't mean he's not a great doc, he is and 1 I really like.
Anyways that aside I see Dr.Earing (Cardiology) and Dr.Kovach, (Heart Rhythm doc) next wk.
The new beta blocker helped slow heart rate some but side effects where to significant so I stopped it. I need to be able to function and that med just makes me feel snowed . I'd guess Dr.E will have something to say about this but when is significant side effects out do any benefits given? I am hopeful we can try something else or figure out how to improve this as slower Raye clearly did help some.

Dr.Bragg asked me today what Cardiology was/is up to,  what are they trying to sort (accomplish maybe?) as it is a little confusing I'm sure to anyone just watching from the periphery even if they know history.
As I explained to her (but probably now very well) the bigger issue w overly fast heart rate even though mine only ranges 100 - 150s is the harder a heart beats (the faster the rate) means the less time there is between each heart beat for properly oxygenated blood to get from the heart ro the lungs  (or maybe its lungs to heart) thus good oxygen to heart and body which can affect many things if I understand it all right.
Before this MVR the pressures between the heart and lungs was significantly increased and the 1wk Echo post this 3rd OHS as I've written about before showed moderate stenosis.
Getting heart rate down, getting rate slower (between each beat) can apparently help the valve function and rid of the post surgery moderate stenosis (the goal).

Anyways, thanks for stopping  by,
Will try to update after next wks Cardiology Appt.
Am opting to see Dr.Bragg again the following wk,  the day before I fly to Boston vs next wk.

Happy April (almost)! May it bring warm weather, good answers and figuring some things out? Warm weather for Marathon wkd wouldn't be bad either =)


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