Thursday, May 1, 2014

It is what it is... but what is it? Who knows..

I guess this is a bit of a continuation from Monday's Cardiology (and overall) update.
I really wasn't sure if I should have the VP Shunt adjusted and hemmed and hawed about it earlier in the week even though I did think it could help. In the end I did opt to make an Appt with one of Dr.Bragg's NP's today and have that shunt adjusted by a small amount.

Meanwhile last night I had posted on my fb about how uncomfortable the area around the seeming TPL Shunt draining end had been and especially how much worse it was last night (but I also was fairly certain it would improve as it has done this 'get worse, get better, get worse' over a few wks now with last night by far being the worst symptoms wise though). Anyways, apparently Dr.Bragg saw this post as she was walking through the waiting room while I was waiting earlier today and stopped briefly to say she saw the post, would mention the symptoms to the NP's and she wondered was it cardiac related (I don't know)? I just said to her I was sorry it always seems like one thing or another and I hate that I seem to need to ask for their advice or help so often. As she usually is she was gracious but non-the-less I never feel great when new issues crop up and feel quite frustrated by these symptoms. =/
Sue, the NP turned the VP Shunt down by 1 setting (both shunts are at '40' now and opted to do a repeat CXR since we weren't sure what came of the Cardiology one (see further down). As seems to most often be the case, b/c why would my body ever want to give a clear cut answer (!!!!) the CXR looked fine, ie no CSF collection in the lung space, the shunt tubing is not out of place and overall seemed about the same as previous, after surgery per Sue and Radiology's report.
Although I hate being emotional I did break down in tears b/c although I don't really want there to be something big wrong I also just wish there was an answer as this clearly isn't getting better and I am frustrated at my body, especially lately. Couldn't I just have some time where there was just nothing going on and the MPS stayed at bay, ie things where calm?!? =/
Sue I think felt pretty bad and I do think she believed me, which atleast helps. I just think (and cant blame them) they don't know what to do. Dr.Bragg didn't want to adjust the TPL Shunt to drain less (Sue thought maybe this would help the discomfort) as she didn't want to do 2 different things at once, which I do really understand. Sue also asked if I thought I should be admitted so they could try adjusting the shunt over a period of days (I guess) which I didn't want to do as I feel like sure we could try that but overall otherwise I would just be sitting there and I can feel bad at home as easily as I can feel bad in-pt.. Here I can atleast do things when I feel somewhat better + hopefully the minor shunt adjustment will make a small adjustment in the headaches if not in the breathing/pleural area? We agreed if symptoms don't improve by next week i'll call and let them know, and if need be come back again (next wk is really busy with other appts and meetings) which doesn't sound great either as I've already been there 3 wks in a row.
I guess I also just hope it improves between now and then by some slim chance as I truly just don't want to keep having to ask Dr.Bragg for help?

Cardiology INR
Cardiology (Nancy, NP) called with the INR results as even though these where done on Monday morning and I saw them Monday afternoon after ERT I forgot to ask about the result and Dr.Earing vaguely discussed the results as a part of the overall other few labs he had requested separately. I hadn't realized Dr.E was including the INR result when he went over the other lab results and to didn't know when to re-test (I hadn't thought to ask till later as there is often a lot to remember as is already!)
In any case the INR was slightly low at 1.9, whereas my range is 2.0-3.0 but per Nancy who called today with the results and next testing request said that Dr.Earing was ok keeping the Coumadin dose the same and re-test in 2 wks (from last mon). I am glad atleast the dose wasn't tweaked!
She also commented how she had been updated about the cardiac symptoms and the seeming Neurosurg. issues and to please keep them updated either via email or via their ACHD Nurse line + also give a heads up when I retest in 1 1/2 wks.
They don't feel the discomfort with breathing is cardiac related as both Dr.Earing and Nancy both separately stated to the affect of "it would be unusual this far out from OHS for a patient to have lung issues/fluid collection related to heart issues" + the Chest Xray's both their's and now the one done at Dr.Bragg's where clear for fluid build up.
Non-the-less they would like to be kept updated to what becomes of these symptoms.

To put it mildly I feel incredibly frustrated today which seems to be the story of my life related to the MPS these days and just wish once lately there could be a clear cut, relatively straight fwd answer?!? I do kind of wish Cardiology and Neurosurgery would talk to each other though I also get it's not as if I am either of their only pt and both are extremely busy.
I just wonder though if it wouldn't help for one to exchange thoughts with the other? I don't really know..
Stay tuned, Thanks for stopping by,

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