I opted to schedule the shunt revision with Dr.Bragg for 2wks from Weds, I could have had it done next Tues, the 11th but have a Sunday School Teacher's mtng that night and honestly even though I really, really, reaaallllyyy want to feel better SS is important to me and I know we have things to sort out for the upcoming SS yr. Believe me I wish that mtng where this wk so I could have had the surgery the 11th! Is what it is though atleast if nothing else my favorite nurse will be there.
I guess if nothing else this will give myself and my Cardiology Team the time to sort out the new HF med and get it started perhaps?
Pre-op Appt
Pre-op Appt for the shunt revision is scheduled for this Fri with my Primary dr. Given I know Dr.Bragg's team appreciates her thoroughness AND Dr.Simpson is well versed on my issues, and when needed reaches out to the appropriate providers it is nice to just have it done with her.
I am a little confused if Dr.Bragg still really needs the 'official' ok from my Cardiology Team (I fwd'd my Cardiologists Nurses note to her) but none-the-less I am fairly certain Dr.Simpson will reach out to Dr.Earing for some reason or another be it the Coumadin dosing/stop date, the new HF med, etc so i'll let Dr.Simpson know so she can make sure Dr.E's Team gives her their blessing to. I am fairly certain this formality is more for the Anesthesia folks as much as it is for Dr.Bragg as they can be fairly particular and I suppose would want to know if they need to take any addt'l special precautions given the new heart changes.
Usually the things my PCP sorts out, makes sure are well taken care of are the pre-surgery steroid dosing, which although Dr.Bragg always makes sure it is ordered some of the Anesthesia people at UW can be more than a little ridiculous about giving it at the approapriate timing. I did see my Endocrine dr incidentally this wk (Weds) so did ask her yet again about the timing and yet again she verified what I know (about solu cortef having to be given at the 1hr prior to surgery point) so I gave Dr.Simpson a heads up and she is going to stress this point in her steroid dosing recommendations she sends w/the pre-op note.
Given I should likely have the this Thurs's EP Study report by the surgery i'll fwd that to Dr.Bragg to ahead of surgery.
On an unrelated note, it is probably the humidity but breathing has felt kind of bad this past few days, it's not as if it would likely be noticeable to other people, it's not as if the symptoms are like i've just run a race short of breath but non the less I feel short breath b/c it is difficult to get a adequate breathe of air, worse as the day goes on (later in the day) which is not an uncommon phenoma in CHF pts. it seems.
EP (Heart Rhythm) Cardiology F/up
I saw Dr.Kovach today at CHW (it has been a really busy wk filled with ALOT of Appts., with 1 more tmrw.) but anyways given the EP Study was pretty much normal and the Cardiac Cath showed increased pulmonary pressures and the severe mitral valve mixed disease he is opting to start the new Heart Failure med (Ivabradine) i've been talking about on and off for awhile.
We have the Prior Auth's submitted to both my Pharmacy benefit providers so is just a wait and see now. Per my Pharmacist who has helped us a great deal with this all Jake expects we would/should typically hear in 24/48hrs if it is approved. That most likely at minimum would put us at Monday. Once we know it is definitely approved, Jake (Skywalk Pharmacy in CHW, AWESOME PHarmacy!) will order the med overnight and i'll go on a 5 day washout of the Diltiazem before starting the Ivabradine.I will stay on the other 4 cardiac meds including Digoxin as the Dig., Spironolactone, Lasix and Coumadin/Baby Aspirin have different mechanism of action on the heart / heart function
Per Dr.Kovach i'll be his 2nd pt to start on the med, his other was started apparently while the med was still pre-approval but was a patient post-transplant who also experienced abnormally high/significant heart rates putting stress on that pts heart to. In his case he did have an issue but Dr.K said he felt it was more likely related to the pts. transplant not the med athough he commented they would never truly know. He also commented it has a pretty mild side effect profile but he couldnt say in my case with my many other issues if I would experience otherwise un-seen issues on it. He doesnt expect so but can't say and we just have to see. He/my Cardiologist feel any risk we could experience are out-weighted by potential benefit we hope to see.
As far as starting it I will not have to be admitted though curiously Dr.K seemed a bit hesistant about this, he did say initially i'd have to f/up at the 1wk mark post-starting it for an EKG, to discuss if any issues on it and then he'd decide as far as how often for f/up's after that. He also commented should I experience any side effects I needed to be sure and let them know so he can evaluate and adjust if needed.
I see my Cardiologist the beginning of Sept. so I suspect (but not certain, perhaps it depends how the med goes) I may not have to see Dr.K. between the 1wk post starting it and the Appt. f/up with Dr.Earing (they work together and communicate closely). I'd imagine a 2nd post-med start f/up with Dr.K would occur at some pt after the regular f/up with Dr.E depending how I was doing on it, I do know he wants to do frequent EKGs initialy on it.
Endocrine Appt
On a un-related, funny but nice note, I saw Endrocrine Weds which is a Provider I really like (but of my Core Providers I can't say there is any 1 I don't like) and anyways have to share this funny encounter:
Resident (Endocrine Appt): "I never thought i'd see someone w your really rare disorder"
Me: Laughing, "Glad you know what to look for now"
Endocrine dr: "I've actually sent some pts up there (UW) to Neurosurg. b/c you're case is probably the most complicated i've seen and I know you've gotten outstanding care there". (given I know she sees alot of really complicated cases I was a little taken aback by that comment)
Funny encounters, another new dr aware of MPS; kudos to Dr.Bragg (I dont know any of my drs who don't talk about her care)!
— at Froedtert Hospital.
I guess b/c they've seen the great care i've gotten from Dr.Bragg and her persistence in trying to help me when in many complicated shunt/hydrocephalus cases (as was my case prior to Dr.Bragg) Neurosurgeons are known to frequently give up or basically abandon complex pts., telling the pt. there is nothing more they can do and/or 'it isnt my problem'. I don't think most people would believe how often i've heard that one from other pts. and including my Endocrine dr has said she's had multiple pts the Neurosurgoens at FMLH have basically abandoned/refused to see as was my case there to. Dr.M works directly with that Dept. (she is Neuro Endocrine specialized) and yet multiple other of her pts she shares w those drs have experienced the same I did as well.... In any case she is one of my Provider that really, really likes Dr.Bragg and recognises how unusually amazing she is at her job!
On a side note to this Dr.Maas and I where talking about the recent Cardiac Cath/Heart Rhythm study and the Shunt issues in May as well as this upcoming shunt revision and she made the comment "UW really seems to be on top of making sure you get the cortisol replacement". I made the comment to her that this is true to an extent, Dr.Bragg when needed really helps advocate for it as some Anesthesia drs are pretty stubborn how they think it should/can be given and Dr.Maas has always been very particular how she wants it given.
At CHW recently they gave it no question how she (Dr.Maas) wrote for it and at UW there are some Anesthesia docs that I have that give it the hour ahead of time no question but 1 or 2 recently have argued saying something along the lines 'we give it right after sedation before your put to sleep (? um arent you basically stressing the endocrine system already at this pt?) and intubated'.. Needless I am pretty stubborn and know what works so have went to toe to toe a time or two (or 3 or 4..) refusing to go back to the OR until the solu cortef was given (which takes all of about 5mins to give through the IV). It is much more ideal when already on the floor at UW and the Neuro Nurses just give it b/c they know me and give it before I ever even go down to pre-op.
In any case, that is all for now. Will update sometime soon. Perhaps if anything worthy after tmrw's Pre-op Appt (but probably include it in a future post).
Our family goes to Bay Beach which will be exhausting but am excited for!
Will update again soon, Thanks for stopping by,
Erica
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