Wednesday, May 1, 2013

Awareness Day, Headaches, etc.

In a couple weeks it is May 15th, National MPS Awareness Day, a day celebrated all over by individuals and families w various forms of MPS and ML. Other than handing out 'Team MPS' pins to family, friends and providers I don't have any plans other than cont' to share information here and on the fb page but it's nice that a day like this exists for not only MPS but on other day's for other disorders to be represented as well and for awareness to be raised near and far! :)

I actually just completely don't get it, don't get what is with these shunts, why they work, albeit even if imperfectly atleast I still feel better for periods of time and especially after this last revision for the past 5 or so weeks). Atleast mornings werent very bad and nights werent very bad (minus breathing but that I try to sleep upright and on the couch as much as possible) and the little symptoms I had where more of a "background annoyance", I could live with them for now. Grr!!!! Dr.Bragg has said all along if I needed anything to let her know and especially last week she was out part of the previous week/last week due to her Mom passing away (I can't imagine) but when she was back said if I needed anything she was back. I called monday and asked her Secretary, Anna if I could have the shunt reset down a notch (at 30, go down to 20) sometime this week and so we are going to do that on Thurs. one of the NP's (Sue or Emily) and I pray it works, Please!!!!!  I know Cardiology and PCP are hesistant about any un-needed surgeries and Dr.Bragg I think is intimidated (?) by the cardiac and airway issues although I do think if it came down to it, which it better not, I so want it not to that with careful fluid management and coordination they would allow a shunt revision. I have wondered all along, if we had such good luck w this Codman-VP valve would the same work better in the TPL shunt (than the current Strata valve) at keeping both shunts working? I may not have had complete symptoms resolution but this valve is the closest i've felt to good in a long while minus of course the external drains. Again, I just say Grr!! Stayed tuned I guess..

I am seeing the Eye doc again next week (local) to get the lenses on glasses adjusted, the ones I just got, they do make a great difference but I think what he said about needing to be stronger (he didnt think I wuld wear them if he made them as strong as they needed to be right away) is true. I am sure part of it has to do with the shunt-pressure headaches.

I also scheduled the Hand surgery  with the Hand surgeon which I think I mentioned last time my PCP wants wants Dr.E (Cardiologist) to do part of the pre-op and she will do part weighing in on endocrine pre/post-dosing, etc. That then is scheduled out to June 5th which is fine and i'll actualy be doing the surgery completely awake, able to be sitting up some during and with a nerve block. On a side note my PCP also commented in the same note that  w the future coumadin dosing this would likely be a oral med (totaly didnt know it came as an oral med, that is AWESOME news atleast in a otherwise crappy med!) and for planned surgeries they would switch out the oral med to injections starting 5 days before any surgery but she said it is manageable. If yah have to take a good with a bad atleast it isnt injections all of the time and doesn't sound like the injections are the worst, perhaps unlike the solu-cortef (cortisol) intramuscular injections which are quite un-pleasant and not particularly pleasant feeling! Those I have to do w any colds, fever, nausea/throwing up or "stressful" situation which to me just means anything out of the ordinary health wise.

The doubled lasix dose hasnt been going all that well, the side effects are something next to impossible between making your hair and skin feel like straw (already feels like this much of the time) although the aldactone seems ok. I am wondering if at fup in a few weeks maybe we can try backing off the lasix and upping the aldactone, is worth asking.. I definitely am not a super fan (or fan at all!) of lasix!

I start back to PT today, has been a nice 1 1/2 month break, though I do basic, simple stretching at home.
Here is a link to a fb version of this page, basically using it to post smaller updates or interesting articles,


No comments:

Post a Comment