Sunday, June 1, 2014

The things we notice, Appts, etc.

Just about every week has some appt. during the week in addition to normal (Normal!?) ERT Infusion every Monday which is like all other appts out of town and at minimum an hour drive for me. I also have been doing PT again on/off (missing a week here and there due to other things) for the past 1-2 months though that is more local.

This last week it was a Cardiology Appt (a f/up) from the addition of Digoxin to cardiac meds a month ago (dose was subsequently increased a couple wks ago). This wk i'll have ERT tmrw (mon), Neuro-Endocrine (FMLH) Tues, and Pain Mngmt on Thurs (also Milw) w/PT on Weds in BD. In addition to all of that I am watching my nephew W-Fr early mornings (Brandon) till i'll take him in to town to school.
Dr.Earing and I (Cardiology) given symptoms are reasonably well controlled (ability to feel like I can breathe/get air more easily is some improved) con't to agree, as I've I think written about before that waiting as long as we can to replace the Mitral valve is best.
Some pts with the symptoms I exhibit would have their valve replaced (apparently) at the range I am in but given 1. having 2 mechanical valves would mean a more difficult pre/post surgery regimen (injection lovenox), admit the day before typically and I believe any time INR is out of range (near constant in my case) pts have to do the self-injections which that part wouldn't be that big of a deal on my part as I already do solu-cortef injections directly in to the muscle when sick whereas lovenox inj. goes subcutaneous, typically the stomach.
A 3rd OHS as I've written about before though would be even more difficult given the 2nd one was bad enough and per Cardiology they had difficult re-starting the heart (had to shock it out of abnormal rhythms when re-warming). In any case that all aside I am non-to eager to under-go any more heart surgery for as long as possible anyways! I f/up in 3 months which coincidentally (or not?) is the 1 year mark for the 2nd (repeat) open heart surgery.

Since my car accident last Febr I have to admit just about every night in my prayers I pray for God to be with me each new day when I awake, to be with me if I am driving somewhere and especially to help me make good decisions in my driving as I am scared to crash again.
This isn't to say I don't like driving, as I do, actually I typically, most days find it to be a good time to just think over the day or week but that doesn't mean I am also not feeling like I am on hyper alert for what might happen or could happen as there is so little about driving that I actually control beyond my own self in my own car. I feel a lot more comfortable in the car I have now (smaller than my Grand Am was, not as wide) and easier to see out the back but I still feel nervous (an otherwise unusual feeling for me) everytime I have to go somewhere!
A cross between enjoying driving and praying for God to help me to drive safely and be safe in order that I may make it both to my destination and then home safely! I've to say spending so much time in the car driving to and from Milw and Madison (typically 2-3times a week), my Sister's in Brandon (35-40min drive) and to my parents who are closer at around 15mins away I do hope I eventually get past this really nervous feeling albeit I don't want to lose the trying to be on extra alert (though I am quite sure that drives other people nuts when I drive w them now to).

Earlier today we had book club at Church which is once a month typically, the book we are reading is called 'You'll get through this' by Max Lucado and related to Joseph's time in captivity when turned over by his brother's.
At the start there where 2 of my good friends and I, )these are the 2 I also teach Sun School with), the 2 whom have most been there for me during medical issues, either taken me to the ER, picked me up when released multiple times in the past year and come to visit when they can. Anyways, somehow we got to talking about the things people do that no one around them realizes and Joan (we co-teach SS) brought up how she is always amazed and thankful at my ability to network within the MPS/rare disease community, to connect families to Drs. or Specialists and help others find resources.
She talked about how I have been able to learn so much about who does what in our communities (b/c others have taught me, I have listened and paid attention, tried to file away details) and thus from her view I in turn help others when otherwise it can be such a daunting process to find this information for a general medical issue much less she though for something less common/more rare.
While it was un-expected to hear her say this I have to admit it meant a lot and I only share this here b/c it really means a lot when you realize other people are paying attention to the things you do or are involved in, are paying attention to what you are involved in in your 'other' (medical) life and that some friends care enough to notice things like this. She made the comment to Connie and I, along the lines of "almost no one in our Church would know the time, effort and detail you put in to advocacy which is a shame b/c you are making a big difference and doing a lot of great work" (wasn't exact wording but something along that lines).
I have to admit I didn't really know what to say to that other than I really appreciate she shared her observation, sometimes it matters that other people notice!

On a different note, I am not sure what made me think of it the other day but Zander (my nephew) will be 8 June 7th! This coincidentally is also the month and year I first received a shunt. At the time as I've talked about before the Neurosurgeon I was seeing placed a Lumbar Peritoneal (LP) Shunt. The next 3 surgeries where w that Adult Neurosurgeon at FMLH (Froedtert) in Milw. The 3 surgeries w that Surgeon where June 07,, July 07 and Febr 08' though we knew basically by that Fall the shunt was on the fritz.
3 years later and much heart ache (frustration!!!) I finally found Dr.Bragg and in turn a Neurosurgeon (Bragg as did the Adult Neurosurgeon at UW who suggested I consult w/her given she had more experience w Hydro). Thankfully she believed me when I said something wasn't right!
Thankfully, by the grace of God I haven't had as many troubles with drs (neurosurgery and otherwise) over the past 3 years as I did in the many years before that and I've got some pretty good drs and specialists overall!

Anyways, Thanks for stopping by,

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