Wednesday, September 19, 2018

Primary dr., Cardiology Appt. Anesthesia dr run in (so sweet)

Copying most of this from updates I did on fb (with  a few edits) so those who are on facebook well forgive me but sometimes it's just easier or I'm just being lazy or perhaps both. =)
This said see below for today's Cardiology Appt and run-in w/the Peds Anesthesia dr. This anesthesia dr had done all 3 of my open heart surgeries, several heart ablations and cardiac stuff (she's been really great for helping my care at other centers through a summary she had written up of her airway findings and what she used for accessing airway in the 1st open heart surgery and subsequent cardiac cath.). After that she's done other things to help. Anyways see below about running in to her and the Cardiology Appt.

Children's Hospital  Cardiology Appt:
 - My PCP wanted Cardiologist opinion about newish symptoms whether they where heart or not (this not being very clear).
 Dr.Earing (Cardiologist) is not completely sure what's going on (💜 that he's honest atleast!) whether it is heart or not but orderered a Chest Xray (lol, I think he's always surpised I know what I do or am as informed as I am about my insur and how it works) + wants to see results of the liver/stomach ultrasound Dr.Simpson (PCP) ordered (scheduled next Tues right before my infusion).
Doesn't think (or is less likely) its heart failure (yay to this!), he's not to worried about the Humira (double yay (!!) ) given risk for CHF w/this.
  If symptoms are not better in a wk w/lasix adjustments then he'd do an Echo (ultrasound ) sooner otherwise the next one of these is in Nov.

Otherwise Dr.Earing just said, which I know, there is alot of issues in my case and what of these is causing the current problems, his biggest concern seeming being the VPL Shunt but he seemed to think it could also be liver congestion (not entirely sure what that means and can't remember what he said but I know Dr.Simpson wondered the same) or other stuff to from what he seems to think.
'Lol, an indirect quote but as he said 'In your case it's never or rarely to clear'.
Run in with Peds Anesthesia Dr -
After the Cardiology Appt I had a few calls to make so was standing outside the skywalk in CHW (near the parking garage) making these when none other than the Peds Anesthesia (airway) dr., Dr.Taylor whose done all 3 of my open heart  surgeries and my 2 heart ablations + 1 other procedure came up behind me and said hi.
So sweet she recognized me (it's been 1.5yrs I believe we last saw each other!).
She and I stood talking for a little while + after asking "you look good but how are you really?" she was asking about the headaches which it is crazy (but so sweet!) she remembers all this. She was truly great! There is a reason some Providers make an impact in a patients life and she was truly one of them in mine.
  After talking about all that is going on and the troubles we've had and without my asking she offered to talk to the  head of Neurosurgery at FMLH/MCW see if anyone he might recommend. She said she would email me if she gets any leads.
We stood talking for quite awhile, 💜 I love  Providers who genuinely care even after they no longer care for you! She is the type I'd gladly take on my team any day!
        If I'd have been thinking I'd have asked her to take a pic in none-hospital attire, lol!
Now just 🙏 these symptoms settle out! Ultrasound scheduled Tues before ERT (Infusion) at Dean. Cardiology will be able to access results through Care Everywhere system and Dr.Simpson will receive directly. 
I am to update PCP this week (the wait time on hold was getting really long when I tried calling today and mychart at Dean is down this wk) so i'll try calling her Nurses tmrw to update her + then I am to update Cardiology next wk (or it sounded like they would call me but either way I recheck INR on Tues and they call back with that result so I imagine we'd just talk then) + we'll go from there.
Thanks for stopping by,

Wednesday, September 12, 2018

Revisiting an old (Neurosurgery) potential option.. maybe.. Cardiac stuff-PCP med changes

**Update(s).. Kinda long..
I see my Peds Neurosurgeon (Dr.Iskandar) Thurs re his call w/Dr.Guillaume (UofMn Peds Nrsgn) a few wks ago.
I have exactly 0 idea what to hope from this appt other than we can figure something out..
This said talking to Dr.Bragg (my former Nrsgn, now in AZ but we've stayed in touch and she helps my team yet) she spoke to a former colleague of hers at UW AFCH re a option Dr.Bragg has long advocated I consider...
Dr.Bragg explained my case, our issues and the complicated problems we've had/have with to little space for spinal fluid/brain and needing to drain really low) to Dr.Mount and my need to drain at extremely low spinal fluid (CSF) pressures to feel/do best...

Dr.Bragg told me Dr.Mount apparently agrees the bone thinning procedure (surgery) is what we need, to help create more room for my spinal fluid and thus shunts to work better.. This would enable more room for CSF (spinal fluid) in my skull. If your thinking that sounds aweful well I agree and have thought the same for years!
I unfortunately avoided learning more about it the entire 5 yrs I had Dr.Bragg here (she'd bring it up from time to time, how she really felt that's the only way we'd get a longer term resolution to my needing to drain so low).
2yrs after she's been in AZ and its just been really, really difficult I feel like

I need to atleast need this other dr and learn about this possible surgery..
Right now there isn't enough room for CSF and I only feel really good when we have Spinal fluid (CSF) leaks.
The surgery seems scary but its actually not cranial vault expansion (where the skull is widened and reshaped).
In this surgery I guess per Dr.Bragg usually the front of skull bone is removed, thinned and then put back in place (w/mini plates and screws). Weird, right?!?

At this point I'm pretty sick of these headaches and the intermittent side effects + especially the affects this unintentionally has on my heart (to much thickened blood through the I guess can and is affect the mechanical valves and is what's part of causing adverse problems they suspect to my mechanical mitral valve now.)
Dr.Bragg is going to ask Dr.Mount if it's ok I reach out to her + I'll talk to Dr.Iskandar @ Thurs's appt.

 WTH right? Could it be any worse then the 3 Open surgeries? It wouldn't be touching brain at all and perhaps not as bad even as the many spine or actual brain surgeries I've had (a few of those where brutal). 🤷‍♀️
Nothing is concrete and everything could change so there's nothing for certain about this but I'm finally willing to talk to this other dr and get info if that is to be the case.

If in fact w/my MPS and lack of intracranial space/need for brain pressures to be very low this would help I just may finally consider it. (As mentioned above we know I feel best at negative ICP #'s but these are really only able to be replicated w/External shunts (w/external drains I've always been great at -5) or Spinal fluid leaks. Neither of those are long term options.
Most people feel good around +10 ICP or higher). My need for negative -'s says alot about need for early Hydrocephalus diagnosis.
Dr.Bragg and Dr.Mount seem to think this would/could help per Dr.Bragg so.🤷‍♀️

stuff... Uncertainty.
Re the Heart stuff, have been dealing w/fluid retention and small weight changes (after quite a bit of unintentional weight loss over the past few months) + breathing is just harder intermittently lately.
My PCP had asked that I come in and see her which I finally did before infusion today (Tues).
She is talking to my Cardiology Team I guess re this all and increased the lasix again..
Dull would be to normal I guess