Sunday, February 17, 2013

Home (Again).... Wishing to feel better..

I am home and while happy to be so I wish I felt better. I hate this and hate these headaches + other symptoms. Sure I can function in the afternoons and if I take the IV Zofran in the a.m am able to eat better but I dont have a great appetite although by supper it tends to get a little better. Appetite in general isnt anywhere near as good as when we have had the shunts working splendidly well. I dont think the shunts are not working I just dont think it is enough fluid that is being taken off with the shunts set where they are but when I do drain at the lowest setting which should be alot of CSF (fluid) I initially feel  much better but then my ventricles collapse and thus the catheters collapse causing intermittent occlusions and  the eventual problems with the shunts leading to all the revision surgeries.

I am supposed to follow up with Dr.Bragg on Thurs and am praying she has been able to talk to Dr.Dickson by then and that she will have some thought on trying this CSF reservoir for taking off extra CSF (in addition to the shunts) as I am tired, just really tired of these headaches.  It is apparently supposed to snow on Thurs and I am praying that the snow will hold off or the weather people will be completely wrong this time. I have an appt in Milw and then the appt w Dr.Bragg in Madison and really need to go to both Appts. The second appt is for my Pain Mngmt dr and for med refill + I  havent seen this dr since early Nov. due to the long Dec and Jan stays + short interval in-between those 2 in-patient stays. She and Dr.Bragg talked several times during this last in-patient stay and Dr.Bragg's team wrote for the long acting pain patch during these past two stays in Jan/Febr and Dec but I need to get the patch and immediate release med refilled + see about other ideas she might have to help.

This is short but please say a prayer for Thurs's appt and that I am able to figure something out with Dr.Bragg + the snow holds off. Also pray the rest of the weekend and busy week ahead (ERT monday, Dentist in Milw Tues (if up to it), and Weds an Endocrine Appt., followed by the 2 appts on Thurs in Milw and in Madison. Oh vey.

One other note, Dr.Bragg's NP asked that I call her monday to let her know how I was doing and check in so  I pray maybe she will have some update from Dr.Bragg; that would be ideal. .. Ive said it before and am sure this wont be the only time I say it again but I strongly dislike waiting for answers or waiting to hear from providers what they are thinking as far as a "next step". If anything stresses me out it is definitely this about my disorder and care.

Anyways enough of my venting, does it feel like groundhog day alot when you (my reader(s) come by and read this as it seems always to be about the shunts, often to be about my frustration at the shunts and my wishing we could figure this out sooner rather than later. =/
Thanks again,


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