Thursday, May 7, 2015

It's been an eventful week, to say the least. I got back from Providence Sunday night which I might add was very fun and I am sooo glad Melissa (1 of my runners) talked me in to going!
The atmosphere out on the course just totally different than the Boston Marathon due to it being a smaller marathon, less turn out and far less people cheering.
Pretty much every single person our (somewhat large!) RfRD cheering group either cheered on, high fived or whatever showed some kind of emotion be it high fiving, hugs, many whispered thanks of appreciation, etc.
There is just nothing that beats that atmosphere and I personally believe any person who feels sorry for themselves whether healthy or not should experience a Marathon!
The after party held at the hotel was great fun, so, sooo many pictures with my runners and Jessi, my runner from the last 2 yrs and then all of us together which was cool, I literally felt like my running portion of 'Team MPS' was complete in that moment!
Cardiology Appt F/up
Yesterday I saw my Cardiologist for a 1/mo fup from his starting the Cardizem last month. With the heart rate logs I was able to email him he already had a plan in mind as soon as he walked in the exam room which was kind of nice.
Because my heart rates despite the Cardizem are so high yet (high 80's to upper 120's, some much higher than that) and he is concerned overall heart muscle isn't getting enough time in-between each beat to get enough properly oxygenated blood he opted to increase the Cardizem dose and as well he is adding a new med, that is recently FDA approved for Heart failure and inappropriate sinus tachycardia.
He is getting back to me about that med but I figured out what it is likely and asked my Insur. Nurse Case Manager if she could find out if it is covered by my insur. If it is not due to being so new than Dr.Earing will go about doing whatever he does to get it covered.

In addition he feels we should add a heart rhythm dr. to our team to (I guess?) help manage the high heart rates and if necessary should these new med and new Cardizem dose not work he mentioned the potential for an ablation procedure where (I believe) they go in with a catheter in the groin and thread up in to the heart to the problem area and essentially kill/deaden that part of rhythm system.
Overall it seems he thinks if we can slow heart rate down this could help with the heart failure symptoms and the overall mitral valve and perhaps if I understood correctly give us more time to needing to replace that valve in another open heart surgery?
I F/up with Dr.Earing mid-June for an Echo and Appt re these new meds and although he was trying to coord. the EP dr Appt for the same day I see him it wasn't possible so that appt is June 4th.
In other exciting news b/c why should life be dull and pain free I guess?
Earlier this wk I started getting pretty bad BUT intermittent side pain that came and went with little rhyme or reason seeming to it. Over the past few days has gotten worse to last night was really bad, already by yesterday I couldn't straighten up fully, I'm sure I looked like a little old granny walking and the pain was starting to be pretty constant.
By last night it was full fledge. I seem to (knock on wood) be experiencing this different than most people but anytime I move an inch, get up, turned over when I was trying to sleep (I am a restless sleeper so that makes for a really long night!) or walked around my side hurt so freaking bad I can't even explain other than is kind of like someone stabbing you repeatedly or twisting a knife?
This in turn for whatever reason seems to be aggravating the Leg/spine nerves quite a bit which has been less than pleasant.
Not sure what to do and somewhat uncertain if it was shunt related or not I went to the local ER where they did a CT Scan and labs and the scan shows a "large gallstone" that the ER dr recommended be removed as soon as possible. This in turn began a VERY maddening day of trying to figure out if this surgery needed to be done at UW as the ER dr thought or not. Talking to my Insur. and to my Primary dr. and in general trying to just deal with the discomfort.
I heard back from Dr.Bragg's office this afternoon, which I might add if your ever in the ER and the ER doc thinks you need a surgery but done where another of your drs is for god sake have the ER dr call that dr before you walk out of the ER!

Per Dr.Bragg's Secretary there was not anyone she specifically recommended at UW, she feels the "shunt just has to be protected" (what does that even mean?) and can be done at St.Mary's. After this I called back my PMD's office for I believe it was the 3rd time (they had specifically asked that I call w/ANY update I had big or not) and b/c I didn't want to go to St.Mary's ER tonight I am seeing Dr.Simpson's NP tmrw morning and they may direct admit to Dean St.Mary's Hospital from there.

All fine and dandy but I am telling you if the Anesthesia drs there give me so much as a hint of issue regarding airway mngmt I am fairly certain I am going to blow a gasket, I am tired of bullshit this. wk. When on the phone w Dr.Simpson (PMD) Nurse I had to choke back tears and they weren't tears of sadness BUT tears of complete and utter frustration at all of this. between the stupid shunts and headaches and Leg stuff and what has been an endless stream of Appts and phone calls this wk for a lot of things.
My INR is also outside the normal range at 3.3 so that would have to be managed before any surgery and brought down. I'll admit I am not always a fan of change and feel comfort in surgeries that take place where either Dr.Bragg is b/c I know she watches like a hawk and chimes in if necessary as far as how something is done or where my Cardiologist is close b/c he to is familiar.
I do not like change and as anyone w MPS knows we have valid reason to be nervous with airways issues and surgeries!
Given I am not sure what her office meant by "the shunts have to be protected during any surgery" i'll talk to whoever is doing this surgery be it tmrw or whenever and perhaps ask that they talk with her to make sure nothing is screwed up with the shunt(s)!
I don't need anymore shit to be wrong! (pardon the language but is true).
My biggest concerns with any surgery at a new hospital/new Anesthestiologist(s) is 1. they think they don't have to use the airway equipment to get an secure airway. 2. The usual argument over steroid pre/post surgeries or procedures, 3. INR mngnt (will have to be brought down) and they talk to Dr.Bragg so they don't in fact screw something up!
I am supposed to see Dr.Bragg in clinic Monday, which I had changed that from today bc of the mtng tonight (ironic given now I'm not going to the mtng!) so depending what happens w the gallstone I guess in the next few days will talk to her then. I do really appreciate that she has been doing the intermittent taps, those atleast help temporarily and calm the Leg-nerve stuff temporarily.
Obvously like always I wish we could just fix whatever is making either shunt not working as optimally but what she has been doing is better than nothing.

I was supposed to go to a Genzyme Mtng tonight in Madison for Lysosomal diseases and pretty disappointed to be feeling this crappy and thus not going. Pretty damn sick of this week and sick of cancelling one plan after another every single day so far (Book Club Monday, (may not be the most exciting but I like it), dinner with friends Tues and yesterday I just came home and did nothing, read a book for the afternoon on and off (Large print is great!).
I did get a lot of phone calls and stuff related to the Cardiology/EP stuff done. Even if it was still related to medical stuff I really enjoy these mtngs held by Genzyme occasionally here in WI and will miss seeing my (Genzyme) Insur. Case Manager and Genzyme Team especially. =/

Will update again when there is anything to update,
Thanks for stopping by,

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