A quiet week of (hard to believe!) no medical appts other than ERT (Infusion) today which since I am the only patient left in our particular clinic the Nurse and I sat out on the front grass of the hospital/clinic for about 2 hrs of the infusion. Very Nice! This week (weds) is also my Nurse-Case Managers last day at Dean (Health Plan) which we basically wrapped up today and ended by saying we'd talk again soon as she wrote down her cell # the day we had met at DHP a couple weeks ago and had asked to stay in touch. =) She gave me the contact info for the new Nurse-CM taking over my case so I've sent an email to that person and a new journey with another new provider (in a sense) will start. If MPS has taught me one thing it is how to let go of the good ones even If you don't want to, many keep in touch and sometimes (like when I switched PCP's last summer) turn out to be hidden blessings. I am unsure if anyone can top PK's dedication to figuring out referral/med/health plan-provider issues but I do think you break some one new in and the good ones mold and learn! On a completely different, un-related and short note, be glad your not in the hospital today, it is 'National new Resident/Intern' Day across the US. Who knows maybe one or more of those newbies will be the next 'MPS rockstar researcher/provider?! =)
See below for the backstory but each day has been getting even less of the over-draining since we adjusted the TP shunt (new valve) setting back up to a higher setting and though I still intermittently get high pressure and vision issues (more with trying to concentrate/read things be it a book or short articles, etc.) I do think having these 2 like shunts is going to be GOOD!! A friend suggested to me to ask Dr.Bragg at fup about setting each shunt once I have fully adjusted to 2 different settings be it like 70/50 or 50/40 see if that makes the shunts I a sense not get compliant? I actually have no idea if this can happen since shunts can't "think" but if both are set at the same settings to drain do they work less well at draining? Who knows! The fup appt is next week, which worked well w picking my niece up this week actually although then next week is appts every single day M-F so good and bad!
We are if it is warm Thurs taking the kids along w my sisters and her family and my parents to Green Lake for a picnic and the kids can swim/play. Friday my parents and I are taking Quinn and Lis to Bay Beach, an Amusement Park near Green Bay which is something we did every year when we where young and have been doing every year since Quinn has been pretty young (he will turn 11 on the 7th). Should be fun! Sat we are having Quinn's Bday Party over at my parents house, a little bit early but we figured since Alissa was here and before we took her home Sunday.
Next weeks great fun includes in addition to the usual ERT on Monday at CHW, seeing Dentist on Tues, Cardiac Pre-Op on Weds and whatever that all entails (through Surgeon's ofc vs through my PCP), Thurs is Pain Mngmt fup (all in Milw) and Friday is Fup in Madison with Dr.Bragg. Fun, i'm sure.
June 27-28-
We switched the Thoracic Peritoneal shunt back up to a setting of 50 today which is also what the VP shunt is set at as I was having intermittent but very uncomfortable symptoms of over-drainage (when it wasn't the symptoms of over-drainage it was almost like it was the opposite high pressure, very odd!) I could tell within a few hours that our having turned it up was the right decision and a lot less of the over-drainage symptoms though not perfect. My Dad had his phone off as he had forgotten to charge it I guess and so I couldn't get ahold of him and then once I did I was on my way to Madison already. What a drive and not because I was unsafe bc I wouldn't have driven there if I didn't think I could do it reasonably well just more that I normally don't mind driving and this time seemed like it took forever and just wanted it to be over! By 1/2 way home was definitely starting to improve. After having spent the better part of the past 1 1/2 days on the couch other than going to that appt today I am glad to be feeling a little more reasonable if still not awesome. Days like today are really one of the few times it seems like living closer would make more sense; not sure I am ready to do that though! I fup w Dr.Bragg in 2 weeks as the stitches on both incisions are dissolvable (usually takes about a month).
Dr.Bragg and others keep commenting how they think the heart valve replacement surgery will make a huge difference for the headaches and shunts; I can't help but wonder if it will? Given there will still likely be moderate mitral valve leaking unless they get in to the open heart surgery and opt to replace both valves will this help the headaces? Replacing the mitral valve as well is an option they aren't completely ruling out; will just depend what they find on direct view as the Surgeon and Cardiologist who will be there plan to replace the aortic valve and to look at the mitral valve. I do know the Surgeon has said he thinks this surgery will improve the super low blood pressure and help heart rate so maybe that in turn helps headaches related to pressure? I don't really know. Would be a nice side benefit, Dr.Bragg had explained how the heart surgery could possibly benefit the shunts. We also have the option as ive written previously of putting the TP shunt back in the Pleural space sometime post-CV surgery.
Stay tuned,
Thanks for stopping by,
Erica
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