A week ago I saw my new PCP for the 2nd time to deal with a bunch of referrals and since I 'officially' had chosen her then we went over a few other things although nothing earth shattering and more background stuff like medical issues. I wont have to see her for all referrals but since we where dealing w 4 or 5 different ones and I am so new to her the nurse and I decided this was the easiest. By this appt she had already helped situate/refer to 2 other drs (new pt referrals not insur referrals) for the possible new PMR doc and as well for the Neurologist who is going to take over the botox in my neck, mid-spine and shoulders that was otherwise being done at Froedtert in Milw.
Some of the new referrals we sorted out together was although Cardiology out of network had already been approved by my insur we still needed the form/info to be submitted, we where sorting out Urology and who would do that ie would it stay w the doc I have had at UW referred by my neurosurgeon or was there someone at Dean who also had spine-nerve (neurogenic) bladder background. The 3rd was for the Orthopedic surgeon at UofMn/TCSC who did my neck surgery and who my Pain mngmt dr thought I should see once (she was recommending I see him last fall/winter already but the endless/continous shunt surgeries kept stopping that) and there was a 4th referral of which I am blanking off hand.
At this point ive transitioned to the new PCP; she seems nice, is young-ish and so seems energetic and interested and has already learned an amazing amount about the issues and MPS in general from when I first emailed her and she said she was interested in learning but didnt know alot about MPS.
I have appts w/a new Urologist (they just called yesterday) and testing + appt is set for Oct but this new dr from reviewing my referral wanted to try a different, new medication sooner and that is one of the drs that is switching to Dean (from UW) but this drs background includes an interest in neurogenic (spine-nerve signal) bladder issues so hopefully it will be fine. :)
Ive already met the new PMR dr who isnt doing the botox but may take over for my current Pain Mngmt dr (=/) unless my PM dr is able to 1. become a dean provider as ive mentioned before or 2. I can see her under my secondary insur. I have to figure that stuff out when I see her this upcoming week. I liked the new dr but can tell she very likely wouldnt be as involved or over-all interested in all goings on of my care as my current PM dr is and plus I just really like my current Pain dr. =/ Ive been really grateful Dean has been so good about realizing so many of my drs are very sub-specialized and they (Dean) dont have the same specialized drs to take on many aspects of my care and even PCP I can deal w as this new one seems good so far but I really, more than anything want to keep this Pain dr and going to figure it out one way or another. Anyone in the pain community knows how hard it is to find a Pain dr worth their weight in gold and even if I get frustrated w her secretary this dr did and has done wonders for my care on top of never not believing I knew what I was talking about regarding when my former Neurosurgeon dumped me and the neurosurgeon at UofMn kept telling me my shunt was fine and I knew, just knew the shunt was not right. Dr.B was there backing me up and trying to help when many others on my 'team' didnt.
Botox is switching from the PMR dr I see at FMLH to a Neurology dr at Dean who was interested in taking my case and doing the Botox. This is set for mid-Sept. (this is done every 3 mo) This should be ok and although if I had to switch I was kind of hoping it would be to the dr my neurosurgeon refers most of her spasticity/botox pts to in her hospital it should be ok and the Neurologist has copies of my Pain Mngmt drs last few notes and the PMR drs last few clinic notes to so she knows what is going on.
Neuro-Opthalm is staying at UW and finally getting the testing and then appt done on tues. - I say finally bc ive re-scheduled this multiple times due to shunt surgeries and then as we where sorting out if this was going to be moved to Dean or did Dean's Opthalms recommend I stay w UW's program. Altogether the appt they say takes around 4 hrs which should be boring and long and I dont expect any earth shattering news; hopefully they can tell me if my glasses rx is correct (ive been wearing them alot more often these days) and just generally a good opinion to have given all of the shunt issues we've had over the past year+.
This past week just over with was even crazier as monday was usual ERT and got home close to 5 after leaving my apt around 8am. Tues I had an Neuro-endocrine appt back in Milw again this time at FMLH (hospital next to where ERT is at CHW) which went well and able to cover a few things with this dr. The lab work all came back fine or stable which is good. The main 2 things or concerns where 1. why are periods so late and so light/sporadic and 2. getting the class done for the emergency cortisol replacement (solu-cortef injections) and she re-covered the times she most stressed it should be used (fever/sick or throwing up, nausea specifically) and she was glad the new PCP brought this injection concern up as it was something she'd been mulling over and thought it was a good idea to have on hand and help recover from any of these episodes. Insur approved these injections so I do have them on hand and the class is scheduled from 2 wks from this past fri. as I had to re-schedule it.
Weds., I saw the new PT for the 2nd time and proceeded to get lost (I knew where I was just couldnt figure out where her clinic was even though id been there 2 wks before!) so I was 30mins late for a 45min appt but she made it into 45mins anyways. She seems good at her job and at the technique my former PT used its just a pain having to drive so far to see her! (she and my former PT are the only ones that do this technique here in WI)
Thurs I was watching Zander my youngest nephew all morning and afternoon and he had his autism-ABA class starting at 12:30. In the morning we ran down to Madison (about an hour drive) to the book store (library as he calls it which we also frequent together) and got some new bug/butterfly books and then went on to my neurosurgeons ofc where the Nurse Practictioner whom I had talked to the day or so before was meeting me to re-check my 2 shunts and re-program my VP shunt. The shunts keep re-setting and so she checked both and re-set the VP shunt back down to the correct .5 setting, the LP shunt setting was fine. Zan had a blast playing in the waiting room (neurosurgeons ofc is in the childrens hospital) and was a bunch of other kids he did extraordinarily well interacting with. He didnt have his customary headphones on (to mute noise levels) and never once complained plus had really appropriate and cute conversations w the other kids and some parents + there was a child life therapist/volunteer Zan interacted with for coloring too. Not that I/we wanted to be there but was actually really worked out well for Z to burn off energy and nice to see how far he has come with interacting with other kids his age and younger + older! It was totally AWESOME! Once we saw the NP (Sue, whom I really like) Zan was fascinated asking her a hundred questions and playing w the actual re-programmer dial once she was done with it (and Zander-izing it to where we thought for a bit we werent going to get the two pieces back apart!). Once we got home it was busy, busy w Z's class and making lunch and fri was more of the same class for him in the morning and afternoon and play, play, play in-between. I was super tired on fri, even more so than thurs but still a good time and for a while he and I even just laid in the grass in the front yard musing about bugs and flowers and fans, ooh my. :) (Zan's favorite things).
Next week is another busy one w ERT mon, Neuro-Opthalm tues for 4+ hours, PT weds (both in Madison and all 3 days an hours drive away), my Pain Mngmt dr thurs (back in Milw and another hour drive one way) and watching Zander on fri again. Ooh my, oh my this crazyiness shall end someday, right!? =)?
Over the past yr ive met 2 families (on-line not in person) whose kids have Hydro and shunts (one of the families is the one my neurosurgeon would often talk about in comparison to my shunt issues and who has 2 shunts as well and who one of my infusion nurses sons goes to school w.)
Anyways so this 1st family has asked me several times if I was interested in participaring in a Hydro Walk in Milw and I wasnt really sure but promised id think about it. It is taking place at the Zoo and that is someplace we (my sister-in-law and my sister + family) want to go this fall so I figured instead of just registering to walk id do more good and help out as a kids area volunteer which seems like fun and a good way to help. Even if we dont end up as a family going to the Zoo w/the kids that day this is a good thing to do .Hydro for MPS is sooo different than Hydro for someone born with it as their main issue but it's still a common issue and still the same treatments generally for both Hydro and for Hydro caused by MPS. Last year and the year before I had stuff I was doing for the Amer. Pain Found including a walk last year that I was asked to volunteer at with APF materials/information as the walk was being held to raise funds for APF. We where asked back in fall to do the same thing for this same walk/group but since APF has closed I figure this Hydro walk is a way to still help make a difference just for a different cause. It should be fun and although nervous since I wont know a soul I am looking fwd to hanging with the families kids in whichever area I end up being assigned! :)
I know this post is long so if you've made it this long thanks for reading and stopping by!