Long over due update

Honestly I don't even know what I've all not updated on as it's been almost 2mo since I've updated here but I just could never quite get myself to sit down and type out an update.

I'll try to keep this short and just the basics..

I guess the main things are the shunt stuff is still going on, we know now the 1 shunt (LP Shunt) likely isn't working like it should from a shunt tap that was done some wks ago so that likely explains my headaches and every increasing symptoms (which have been kind of aweful). - My Nrsgn doesn't want to fix this though till he gets some device he's been trying to get approved past the FDA or Pharma approval and that's been moonnnttthhhssss + even after he would get approved it then would be 6mo more of it being implanted apparently that he would be collecting intracranial pressures remotely BEFORE he'd consider revising my shunt or doing something else. All I can say is what the frick?!?!? It has been so frustrating. -
I don't remember if I updated about that or not but I saw the UofMn Nrsgn a few months ago and he had given a few suggestions for things he thought might help the situation but those of course where discounted and never considered. I still can't quite figure out why my Nrsgn wanted other drs opinons if he never actually was going to consider what they thought? I wish this where an easier answer and weren't so hard to find a different dr. - It's not even that my Nrsgn is a bad Nrsgn, clearly he's good at what he does but for my case he is adamant against learning about my underlying disorder and actually helping. =/

Otherwise just the day to day - holidays are creeping up or I guess really are in full swing since Halloween is over and thanksgiving in a few wks. I can't quite get in to the swing yet but have been planning for Sunday School for our Christmas activities and that part I really love as well as when Z (my nephew) comes next since he LOVES Christmas trees will let him put mine up and decorate some. I honestly could do without the extra clutter but it is kinda pretty when it's all said and done decorating. =D)

The humira study I was in finished up a few months ago and I have stayed on that drug, every other wk (usual dosing for humira). We have the Lasix heart med at a stable dose now and that seems relatively ok along w/the other heart meds.
I go back for the x3 mo botox injections later this wk which helps muscle over activity (dystonia/spasticity)  and although I could do without the actual injections I am looking fwd the help those give! I'll start PT again in the new year and between not doing that and we had tried a lower dose of botox this last time my back muscles have been less than great. I actually look fwd to those injections which is CrAzY!

Will try to update sometime sooner this next time although really it's just been a lot of mundane, same ole same and mostly trying to not lose my mind (kind of kidding but at same time is frustrating) with the shunt stuff.
Thanks for stopping by,

Erica 

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,

 

Erica