Friday, April 5, 2013

PCP, breathing, tattoo appt..

Just  a quick-ish update, I had been thinking about getting a 2nd tattoo on and off for awhile but wanted it to be something id like and had a few tentative ideas so was just a matter of time I guess. I finally thought of doing the IDUA strand of DNA which lies on 4p16.3 and is where the error occurs for MPS I. I'll get the actual tattoo next thurs after fup appt in Madison and had the initial appt today (Weds),

 **Update, Thurs. - Dr.Simpson (PCP) sent me a note earlier today that she had called my Cardiologist and was just waiting to hear back from him to get his sense of what he felt we should do next ie (see below) the Echo as she would like or something else. I imagine if he'd want anything since she already did the other tests he would also say do a repeat Echo.  ..

It seems like it's been eons already since I got out but in reality has been just over a week from the last shunt revision and cont's to go fair, atleast the new (VP shunt) valve seems like it is working some and that is better than nothing.
The breathing symptom recurrence started last week actually while sitting in church I was having annoying episodes of feeling short of breath again, initially lasting short periods and isnt realy like an "i'm winded" feeling but instead is similar to the episodes id get before I was put on the new cardiac meds and feels alot like I am suffocating if anything. The symptoms have ebbed and flowed over the past few days so are more intermittent like they where late last week vs how they where the beginning of this week.  I had sent a note to my PCP on monday and her nurse caled me that night wanting to set up an appt as my PCP was out of the ofc + she thought it needed to be evaled. I had the appt today (Weds) since I was in town and PCP did a few hands on simple tests to see about retianing fluid (back when I was in the hospital from this last surgery I was having what amounted to/looked like marshmallow effect like swelling in my stomach and feet bt that improved once I got off IV fluids and even more so once I got home. The simple tests she did could show her if I was retaining fluid elsewhere in my body and I apparently am (weight was about 10pds more than several days ago/and previous appt so she wanted to do chest Xray, labs (looking at cardiac function) and (I believe) talking to Cardiologist, will get back to me with results and mentioned if the labs and chest xray where fine she would likely increase the lasix short term and want a repeat Echo and EKG but I (think) will talk to my Cardiologist. Would be nice if we did the lasix if it worked at the increased dose and then symptoms resolved once we backed down to normal dose again!  The lasix dose she is considering  for 4 or 5 days would be small from the current 40mgs to 60 mgs (a small increase, short term as I struggle w the lasix dosing).  Add in: Just read note from Dr.Simpson on MyChart, labs where fine minus mild on-going anemia (no change) and Xray also fine. She requested I set up an Echo + we'd go from there
I am assuming she means through my Cardiologists ofc but unsure so will wait for that response, I cant imagine it would make to much sense to do a repeat Echo anywhere other than where all recent, previous ones have been done though for comparison sake? These admittedly are the times although I totally know how busy drs are and especially PCP's it would be quite nice if they talked to each other to square this sort of thing away or Cardiol. could work w/PCP on thoughts. One can wish it where that simple, right!?

Yesterday (Tues) I saw the local Optometrist and array of eye tests + the usual insight (Astigmatism, Far sightedness, likely need bifocals within a few years) and ordered new lenses though those will be put in when the order comes in as I stayed w my current frames vs buying another new pair since ive only had these ones since last fall. Optometrist didnt do the full rx again which is fine by me and just said since I was able to adjust to my current prescription this to would take a little getting used to but shouldnt be to hard. Fun.

I'll update when I know anything from Dr.Simpson and otherwise next week is just a few things going on (the usual ERT monday, Dr.Bragg fup Thurs and tattoo thurs as well. Off hand I think those are the only things. I leave for Boston on Sat. the 13th.

A last note I like doing either a review game or a craft for part of the Sunday School class when I teach and came across an idea to use felt, dowels and other craft items to make banners for 'He is Risen'.  This is just the starting point and the kids will then be able to design/decorare their own banners and choice of colors however they chose in class + can then be hung if they like.

Stay tuned, thanks for following these updates,


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