I don't know why I write these posts but then either never publish/share them or finish them vs coming back multiple days later and finishing basically different thoughts. Non-the-less this is from both earlier in the week (below) and the past day or two.
It has definitely been a rocky week with plenty of up's but seems like many more down's due to cycling between high and low pressure issues. Tues I think it was we re-programmed the VP Shunt from the lowest '30' setting to '40' and then on Thurs we re-programmed again by 2 '10' increments to '60' which helped some especially during the day with the low/high pressure swings.
Nightime cont's to be a challenge so i've spent many of the nights avoiding going to sleep only then to wake up every couple hours due to pretty significant headache symptoms.
Today (Sat morning) we opted to turn the VP Shunt up by another 2 '10' increments to '80' which tonight will be the true test.
Honestly when I feel good I feel ridiculous being here and am bored out of my near skull but then when I have the symptoms I know being at home would be nothing but a waste as I would just end up back here.
I am truly hoping and praying we are able to figure this out, that Dr.Bragg cont's to think outside the box/have much patience and she doesn't get upset at me for this being a less than smooth recovery/symptom recovery.
It has been really disappointing that with both shunts working completely we haven't gotten back to the really good, almost symptom free way I felt pre-the past month or so? =/ I don't/can't blame anyone as it is just the way it goes with MPS and especially with when you have brain compliance issues (which means your brains pressure needs can change often). It is often very frustrating!
On a different note, I am praying we figure this out as the Boston Marathon is in 2 weeks (2 weeks!) and I soooo want to feel better for that!
Probably not related but heart rate has not been under the high 80's and mainly in the low-to-mid teen 100's (100-118ish typicaly) since Fri/Sat a week ago so that is more than a little annoying and causing skipped/double heart beats. Additionaly I itch like crazy nearly head to toe, worst being the incisions on my back and head; not much I can do except ice the areas, try to do lotion around but not on the back incisions and otherwise just ignore it (not easy!)
Written 4/3 -
I've talked about this quite a bit in the past and typically related to surgeries; I have a lot of issues with trusting providers (people in general) even though I know deep down in the case of like Dr.Bragg I really do think she wants to help and probably wouldn't give up.
I think it is so many bad previous experiences, so many other Neurosurgeons who didn't believe me, told me I was making my symptoms up or who initially would see me but then when the answers weren't clear cut they wanted no part of my care.
I know I need to work on my trust and especially my trust in Dr.Bragg, I need to do a better job of talking to her about my concerns (I am getting a little better) and I probably need to not keep so much to myself as she/her team can't help if they don't know. It is just INCREDIBLY hard though; so, so difficult to let down your guard and in a way be vulnerable b/c I do feel like when I do that, will that be when she to would stop helping? Probably not but like I said in my last entry, rational thoughts are not always that easy when your over tired or not feeling well and you have a hard time to begin with gauging someone's thoughts on your situation/care.
Last night (Tues or Weds) I hadn't talked to Dr.Bragg or her team yet but wondered due to how the symptoms where occurring if we could consider either adjusting one of the shunts (likely the VP) or perhaps tapping the shunt to see how well it was flowing. My Nurse was able to page the Resident and they talked to Dr.Bragg, who had been by earlier in the day but I must have been sleeping as Dr.Bragg said today she didn't have the heart to wake me as I looked exhausted and typically I will wake up when she is outside my room but had not this time.
She told the Resident that we could definitely try re-programming the VP Shunt valve but she'd feel more comfortable if we did it in the morning (this morning + the programmer was locked in the NP's ofc) which we did today vs one of the Resident's trying to do it.
Needless last night/early this morning where pretty aweful with wild swings between high and low pressures and a lot of sleeping/pain meds but thankfully our resetting the VP Shunt up by another '20' to 60 (goes in '10' increments) made a pretty significant difference. Although I still have the swings in pressure between high and low it is nothing like the past few days/much of the week had been.
When I talked to Dr.Bragg tonight she said depending how tomorrow morning was we could reset the VP Shunt another notch up if need be. Based off right now (2:45am) I think we'll likely have to do that as mornings are typically one of the worst parts of the day and my stomach currently feels like it is riding a roller coaster. Yuck!
One thought Dr.Bragg had regarding why the sudden need to dial the VP shunt up (she wanted to do one shunt at a time which makes sense) was with our replacing the ill-working previous VP Shunt (she feels based of the revision last week that it was either partially blocked or completely blocked) the new shunt would basically be "wide open" and free to flow so having it set at the lowest pressure would be to much and my non-compliant brain would then cycle between high's and low's in pressure (dumping and filling) causing the symptoms I've had.
Made total sense to me and was something my Mom and I both wondered since the surgery last Fri though symptoms progressively got worse over the almost week since that surgery.
When I was telling Dr.Bragg about my fear that she'll get tired of the never ending (so it seems) shunt issues I said a few things and stated my concerns but also said about knowing I need to learn to trust her more given it has been a rocky almost 3 yrs and she still has been by my side. She made a funny comment to the effect of "Your stuck with us, we're not giving you up" and then said a few other things. Somehow she always knows how to make me laugh when in all honesty I feel really uncertain..
She feels like it may take us a bit but we'll have to figure out what my brains "new normal" is now with these new revisions and adjustments.
I really tried to share my feelings to Dr.Bragg's 2 NP's today, which is something I've done hesitantly in the past to, because I do feel like it is the only way they know how scared some of this all makes me (I am not the worrying type but I do worry about being abandoned shunt wise again). Since we've gotten the shunts at least working better for periods I've been able to be involved in more things (teaching sun school, church committee and book club, seeing closer friends more, traveling more and of course my part time work w Gene Spotlight).
When Dr.Bragg came by later this afternoon I really tried to be honest about how uncertain I feel, how I know I need to trust her better and how past experiences have made me more jaded towards what providers say.
This is a link to an article I wrote about my friends, the Siedman's whose son Ben had MPS III and who passed away in Febr as well it is written from my perspective about my Genzyme-RFRD partner Jessi:
http://runningforrarediseases.org/2014/04/05/bens-dream-jessis-run-our-day-mps-awareness/
Thanks for stopping by,
Erica
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