CXR, TPL/VP Shunt (appreciating Provider openess and honesty)

I'm just going to say I love how alike my Peds Neurosurgeon and I think on some things, in this case how the 2 shunts function and aid each other - the TPL we've always considered to be the stronger, better functioning of the 2 shunts and seems this latest VP Shunt surgery proved this once again.
I wrote about the Pulmonary Appt last week and Chest Xray (CXR) results showing 50% improvement in the Pleural effusion (fluild build up in area around L lung which is also the space the TPL Shunt drains to). To coincide with this since the VP Shunt surgery and although the cough has cont'd to be pretty persistent throughout the day it is still at about a 50% improvement from prior to the VPS revision. (that is saying something given how many of my ERT Nurses have commented "that cough really doesnt sound good" and "if only you could get rid of that cough now" b/c it's there consistently throughout the day. Still the improvement I did get was nice - now instead of a constant (sounding like) smokers cough I just have that hack about 25% of the time and the rest of the coughing time is milder/not as deep.
I emailed the most reecnt CXR results (released on my PMD's MyChart system) to my Neurosurgeon and Cardiologist and my Nrsgn commented back (which is almost exactly how i've described the function of the 2 shunts to other Providers/my Nurses/family/friends):
"I suspect it improved because your other shunt is now working, putting less stress on your thoracic-pleural shunt. Kinda proves our theory that they work together but don't quite add up to two shunts. Just my initial thoughts."
I love that about Dr.Bragg, that she's so willing to share what her thoughts are and really when it comes to the shunts, either b/c i've learned from her or for whatever reason we think alike on areas. =)

I see her in f/up Weds morning (bright and early as it turns out) and then my PMD that afternoon (Hand pre-op) which perhaps less than ideal the time between the 2 appts BUT still better than making 2 trips to Madison on top of today's trip to Milw. for ERT and Thurs's trip also to Milw for an Appt!
There's been some question on my part about a ugag MPS test (test the level of glycosaminoglycans in the body in pts with MPS I) that was done and 2 drs in the MPS Community commenting the wrong test was ordered and results that we got wouldnt be accurate. My PMD asked that I bring the results from Genetics with me so pehraps she can help sort this out.
Next week in addition to the usual ERT (monday) is a Cardiology Appt on Tues (whch btw INR by some miracle was back in range today just 2.5 short weeks post the VPS surgery! Amazing given all the stuff given to bring INR down that Thurs when surgery was post-poned to Fri.) and then I leave for FL Weds morning for 5 days (Disney-MPS Conf.). =)
Will update after both appts if there's anything to update about.
Thanks for stopping by,
Erica
My Sunday School kids and I did the ceramic ornaments (stars for the star that lead the shepherds to Jesus in the Manger) as a craft though our lesson was unrelated.
The kids enjoyed it and something they'll have if they wish forever.
And last my tree this year - pretty simple :)

Pulmonary (Lung) update

I reached out via email to the 1st Pulmonologist (Lung dr) I saw 10 yrs ago last week, she is a dr. I started seeing shortly after I started seeing Dr.Earing (Cardiologist, he had sent me to her when lung issues where found on some of his testing) and i'd seen her for some years after that.
For a while b/c sleep issues/sleep studies where also being monitored I followed with her colleague and then for the past few yrs Dr.E just monitored with testing the Restrictive Lung issues as it wasnt really a big issue.
In any case because of the on-going pleural effusion and symptoms my PMD had wanted a Pulmonary consult again to make sure the fluid in the lung space wasn't caused by an infection (no real signs of this and right now the only real on-going symptoms are a persisten cough and the past day to today a little discomfort when I cough in my R-sided back and chest).
Earlier this week at my PMD's wish I saw a Lung dr at Dean, which is her hospital system and seemed to go fine. Per that Chest Xray compared to the CXR and CT Scan about a month ago the fluid was down by about 50%. I honestly suspect it varies day to day given somedays the cough is very mild and other days I rival a smokers deep hack. It is odd though given prior to a month-ish ago I had no symptoms from this and no cough and now can't seem to shake it. To quote my PMD in a MyChart message she sent after the Pulm. Appt and regarding potentially switching back to Dr.Biller at CHW/FMLH she commented "I am fine with this, thankfully no procedures are needed for this yet" - alot of confidence it will resolve on it's own for good, lol? I do trust this dr. just thought this was a funny comment.
Because that Pulmonologist wanted to keep tabs on the fluid and b/c my former Lung dr. was more than willing to see me again (she emailed back) I am going to go back to her and can see her the end of Dec.
She also could get me in the 17th of this month but I leave for FL for the Disney Conf. for 5 days then. Given Dr.Biller is at the same hospital as my Cardiologist it just seems like it would make sense to go back to her? My PMD and I guess if I understood her correctly my Neurosurgeon to feel it is likely a combination of the TPL Shunt fluid draining and cardiac issues causing the fluid to sit in the pleural space (where CSF drains to) causing the symptoms, so seems like it would make sense to me to have those 2 drs (Cardiologisy, Pulmonary) at the same place? My PMD was ok with this plan as she is good about reaching out to any of these drs when she needs to and when they need to they've reached out to her. Most send their notes to her as well.

Otherwise next week I don't yet know what's the schedule/situation but supposed to see Dr.Bragg for surgery f/up but per her Secretary she may have jury duty (I think thats what it was) and Anna would know today if she was going to or not (I forgot to call till late this afternoon). - So either i'll see Dr.Bragg or one of her NP's for f/up. I have appts on Monday (ERT, normal) and on Weds (Madison, West side) and Thurs (Milw) so am kind of hoping whatever the case is when I talk to Anna Monday we can perhaps make Weds work or I can shift something around to Tues or Fri with them and the other Appt.
Atleast I can say while not totally perfect I have been feeling pretty good, hopefully it lasts but at the same time I just enjoy each good day with minimal pressure headache that I get!
Thanks for stopping by,
Erica