Tuesday, March 6, 2012

On turning 29

So this is another one of those updates that has been happening over the past few days so I will try to make it make sense! :) Yesterday I turned 29 and I figure my 28th year was filled with enough surgeries from start to finish to cover this year and maybe a few more years too??? With the hip injections, Port placement, (for making ERT easier) the initial shunt revision and lumbar spine laminectomy/nerve repair (end of May) and  11+ shunt surgeries since  + a handful of additional small shunt procedures since. (ICP monitor placement, shunt taps, etc). That was nutty! I know this will sound quite odd but ive always liked odd years better age wise not that there is anything special really but in this case I can hope this year may be a little quieter and maybe, just maybe the shunt will stay working for a long while. As my Mom said the other day when we went someplace together, even a year would be a welcome break but we'd certainly take many years of a working shunt!
Ive had quite painful sciatic nerve type pain for the past 6 or so weeks which makes sitting for any period of time really uncomfortable - my favorite place to sit and do stuff here on my laptop is on my bed (vs my desk which is usually covered in papers and documents, records, etc) I love just sitting leaning back against pillows (upright) legs straight out in front of me or curled up but definitely doing less of that these days. Ive been back in PT regardless for the past 2 weeks so am hoping this will help some in addition to the stretching ive already always done everyday. We will see - im sure it will (whatever it really is!) will heal and go away as it always seems to.

I have been feeling really good  for the past 3 days - a little tired on and off sun and today (this was written on mon)  but likely because I got up early with Zander on sun and had him from early Sat afternoon, overnight all through sunday when we had a birthday party with my siblings and a few relatives at my parents house.  I then fell asleep around midnight Sun night and was back up to head to ERT early mon.. Really the only symptom that remains is vision though which is not perfect but so happy to not have all the other symptoms, I hope it lasts!! Most of my siblings came to my parens house as did Zander and I sun and a few other family members for my twin brothers and my b-day (which is actually today) so it was definitely a busy day/busy weekend!

My neurosurgeons nurse sent me a message earlier today that she talked to the infectious disease docs and gave them my normal UA result (from the UTI and klebsiella infection) and apparently ID docs told her that at UW the policy is in pts who've been diagnosed with 'extremely drug resistant organisms' the isolation measures will stay on my file indefinitely! Wow! This means for every little thing from clinic appts, to any tests, to surgeries, to in-patient meal delivery, etc., etc EVERY person who comes in contact with me has to due full on measures from gown, mask and gloves! This after we did 2 different courses of antibiotics recommended by ID and the UA came back negative 2 weeks or so later! And the funnier part is where I get ERT the nurse wear a mask and gloves to access my Port but otherwise no one has ever done these measures and same with all other appts at CHW and FMLH since!  Sometimes healthcare actually is quite backward to me and makes me laugh purely out of it's craziness.. Definitely odd but also not anyone's fault, the UTIs have been an on-going issue every since the spinal nerve/bladder injury last May and signals just dont appear to communicate right yet. Both my neurosurgeon and the Urologist feel it would take about a year which will be end of May/June for the nerves to really heal.

           I found this picture  of the same programmer (magnet) device used to re-program my current VP shunt valve.
This 2nd picture is a copy of what my 1st programmable valve (teh 2nd valve is a fixed pressure) looks like and another view of the re-programmer device.

I read a really great analogy on hydrocephalus today - I used to be able to describe the problem ok but sometimes explaining it to other MPS families or friends who had previously never heard of this issues and in the case of some of the MPS Families where now facing this secondary diagnosis describing it in easy to understand terms was sometimes a little difficult for me. Ive gotten some really great (and funny) analogies of which ive shared some here from my neurosurgeon but today also read another great one about how the brain is like a kitchen sink either it's always running (kind of like the broken toilet that always runs from a few weeks ago) or it is a sink that should always be on but the sink holes become clogged or partially obstructed and  fluid isnt getting drained and builds up. The treatment is of course just like fixing a broken sink is to  create a new sink or create a new plumbing system to divert the fluid (CSF) elsewhere.

Picture of how the VP shunt is placed/threaded.
Ive been busy this past week on and off adding a few resources here although there are a couple articles I need to re-locate that where really interesting to me that I will add to the new resource guide on the left of this entry (further down the page.) I also have been adding to and changing different things about the WI-ACHD (adult congenital heart disease) blog and finding it quite interesting + informative working with the other 3 people involved in this. I love new projects in addition to old on-going ones! :).
More soon - take care,


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