Monday, July 31, 2017

Trying to hold on to hope..?... Peds Neurosurgery (UofMn) ), MPS Conf. -

I haven't written in a while for now reason other than I just haven't known what to write about. No I still don't feel great but who wants to read about my constantly whining about not feeling great? No one I'm sure thus I don't write and honestly there hasn't really been that much other than status quo stuff going on.

Shunt / Neurosurgery
Headaches (really it's more  pressure than it is actually a headache though I call it a headache. I get what I refer to a 'mini migraines' when dealing with the pressure and those are a headache - it's odd I guess to explain. Best I can say I suppose is if you had on a really tight, uncomfortable  headband that went all around your head and that begins to affect your vision. That is what my headaches (pressure) are a lot like.  Not very comfortable and needless the only type of headbands I wear are soft cotton ones or I have several that are plastic but 1/2 of the band is stretchy material (bc I hate having hair in my face).

UofMn - National MPS Society Conf.
Weds I head to Mn for the National MPS Society Conf which runs Thurs-Sat but 1st am seeing the Peds Neurosurgeon at UofMn Children's that I've know quite a few yrs though have never met (he was the Nrsgn who helped Dr.Dickson when I was in her Intrathecal Study yrs ago and she/Team suspected a shunt issue then already. She'd talked to Dr.Guillaume (who was then in Oregon) and he in turn referred me to who I see now (and that whole amazing fiasco of an appt. yrs. ago).
Anyways so Dr.Guillaume came to UofMn a few yrs ago and over the past few yrs has helped Dr.Bragg and I with questions we had re my shunt issues (and she would reach out to Nrsgn she trained under).  Dr.Iskandar my Nrsgn since Dr.Bragg moved last yr had asked me to get an opinion from someone in my MPS Community so I emailed Dr.Guillaume (who is good friends with Dr.Iskandar, I can't decide if that's a good thing or not given Dr.Islkandar won't seem to listen to what Dr.Bragg's seemed to try to tell him? I'm not sure. I'm honestly not sure how I feel about this appt other than frankly nervous, some scared (bc what the hell happens if he doesn't know/have a suggestion or something else? Shunt taps show fairly clearly there's a shunt issue and the recent Chest Xray done for Cardiology shows no fluid in the pleural (lung) space which there should be some I'd think if the shunt where working right? I don't know is all very confusing to me being quite honest.

I just pray Dr.Guillaume can give us a suggestion that Dr.Iskandar would really listen to. That Dr.Islamdar really would go in and look at the lumbar and thoracic (low and mid back) scarring which is apparently pretty severe and figure out a way we could re-position that shunt to give better relief and to calm the incessant radiating low-to-mid back pain. It stinks being really blunt!

We've been adjusting/titrating the (not so new anymore) Heart med dose while keeping all other heart meds the same with very little success for PVCs (skipped beats) and new fluttery rhythm. About 2wks ago the dose was upped to the highest dosing at 3times a day (I totally screwed that 1 up and had only been doing it 2x a day. 3x a day is a PAIN!).
Non-the-less I am tired of calling Dr.Kovach's Nurses reporting 'no real change' as I feel like a pain in the arsh and frankly I just hate continually needing to ask any of my drs. for help. I'm not good at that.
I guess the next alternate med Dr.Kovach recommends, if my Cardiologist (same clinic as Dr.K at CHW) ok's it is Amiodarone. Another awesomely awesome med choice I'm sure (and I don't say that to be negative it literally just has a terrible reputation, even my Team is hesistant about it and leaving that and 1 other as last ditch). Lovely, lovely, lovely.  I'll call sometime this wk, maybe tmrw.

New Infusion Site:
This has been going well - about all there is to say! The new site is well and my Nurse + the back up Nurse I have (if mine is out or not there a day I need to change)and the other Nurses + the Pharmacist are all very nice. Hast been good. =)

Sunday School -
Hard to believe but have been working on this for here and there for a few wks now. I love doing it and honestly I love that it's a constant reminder of all my God does for me and what I can (try) to do for others by sharing God's word! I love that I get to teach kids and witness through my own personal struggles to my SS kids that our God really is with us through thick and through thin.
I did get a heads start on things with SS, earlier than probably needed (so I could work on various things like rdering our teaching materials, sorting the materials, getting ahold of Teachers, etc  I needed as I had time and work with our new Pastor on whatever he needed me to do) but still hard to believe roughly only a month till Sunday School starts again! I always look fwd to this though (not so much to Fall and cooler weather though I just love seeing my kids). Some yet to do on my part but the part that I stressed the most (organizing Teachers for each grade) should be worked out! That was a HUGE relief!

Humira study:
Not much to update here other than I signed and sent back the consent forms, sent in the records needed (minus 1 for joint range of motion, which I am seeing my PT next wk to get the measurements) and scheduled to go out for the initial study start the end of Aug. We initially where going to do Sept but Dr.Polgreen and Team asked if I'd be ok coming out the end of Aug which should be ok. At this study they'll do the rest of the study enrollment then draw whether i'll start on placebo or humira (though I and Study team will all be blinded to which I am and no matter i'll have to do an self injection every 2wks).
At wk 16 then Pts on placebo switch to Humira and Pts on Humira switch to weekly injections and conts to wk 52 if I remember right.
In total there are 3 or 4 visits to CA (Harbor UCLA, Los Angeles) for the study.

Will try to update next wk re the Neurosurgery Appt. I do then see my local Nrsgn (Dr.Iskandar) re the Appt this wk in a couple wks to see if we can come up with a plan. Can't even tell you how much I am praying we could and trying to be optimistic. It's really hard to not be. =/  Say a prayer. I so need this to go well but am nervous (and I don't get nervous! I wasn't even nervous for the 3 Open Heart Surgeries which is CRAZY!!!!!)

Thanks for stopping by,