Inguinal Hernia surgery; Bronchoscopy procedure. Anesthesia, VPL Shunt revision 8/27

Inguinal Hernia surgery
The inguinal  hernia repairs (both sides) the 1st of the month went really well especially initially. Not really all that painful after surgery, I didn't take any additial pain meds once I was home and ice was the name of the game if anything to help. Overall the biggest issue 4 or so weeks later has been swelling and honestly EVERY. LITTLE. THING. I DO I swear sets this swelling off. That I will be honest is uncomfortable (but not really painful, hard to explain but just uncomfortable and limites clothes that are decent fitting wise to not cause this discomfort. It's definelty kinda odd! Bowel issues awesome enough right after surgery where really good, like in a way they haven't been in a long time but has seemed to back track a little as the swelling ebbs and flows.

The mesh that was placed also seems to cause irritation the worse the swelling gets but the swelling doesn't seem to get set off by any particular thing but is helped by either ice or taking a shower/bath (which I could start doing again at 2wks post op. I don't take alot of baths but is nice on occasion). Ibuprofen seemed to help but I can't do that right now b/c of the VPL Shunt surgery on Tues (moved up from Weds) so I might call while at Infusion Monday and see if PCP has any other suggestions. It is odd and I wish could get it all just calm it's stuff down for good! It was aweessommmeeee how good bowel/stomach stuff was right after surgery!

Anesthesia - Hernia Surgery
The Anesthesia team (who my PCP has said if we have other surgeries at Dean she will request that dr/team specifically)  thankfully followed the cortisol instructions my Primary dr and Endocrine set forth (stress dose steroids, to prevent my body from crashing during surgeries or procedures or even when I am sick/fever). They also really seemed to have done their research on my airway and cardiac issues and listened to what my Primary dr (PCP) noted in what she sent over so intubation/airway to went well with fiberoptic airway placement.
They where great about minimizing fluids both in pre-op and in post-op to prevent causing fluid overload and thus irritating the currently underwraps/not really an issue Congestive Heart Failure and they where AWESOME about letting me stay sitting up in the OR (due to my positional headaches and separately the breathing issues if laying down)  right up till they sedated me (through the mask and via IV (via my port, which awesome they used this to! I had went in with it accessed but still never a guarantee (although I am pretty persistent they use the port for those drs that don't want to and can place a peripheral if they really need once I am asleep).

It was just nice overall how smooth it went! I'd for sure use the same General Surgeon and team if ever needed!

Bronchoscopy - FMLH August 8th
This procedure also went really well with a fanstastic anesthesia team and the dr who did the procedure seemed very nice. Honestly the anesthesia people are who I often have more concern with so when they come in and are willing to hear my input and geniunely want to know my opinions I feel very little if any concern how an actual procedure will go. Here to they did the cortisol pre-surgery/procedure with no arguements. They minimized fluids for the cardiac stuff and it all just seemed to go really smooth.
 Results wise because they aren't able to actually biopsy the area in my lungs that these 2 nodules are growing they opted with this bronchoscopy to do a less invasive "flush" which basically means they place a scope down your airway in which they can visualize your airway and lungs and then they (I guess) place some saline in the lung area after which they suction this back up in the hopes they can get some of the nodule tissue (?? mark here, lol I might not have this completely right but I think that's what it was) and they then grow that out in the lab over days and weeks.
 Per my Lung dr the 1 test can take up to 3 wks so her and I will touch base in a couple more wks and go from there whether it shows anything or where do we go from here. It would be nice if there where a simple answers but take it as it comes.

VPL Shunt revision - Tues Aug 27th.
The VPL Shunt revision was moved from Weds (28th) this wk to the 27th so I moved my infusion to Monday. It just realized though as I am typing this the Drug Rep for Genzyme the company that markets my drug was planning to come to town Tues so I just messaged to let her know. Thank heavens for text msg sometimes! I had put her visit on my calendar but then completely spaced about it till now. I feel like I do alllottttttt of this "spacing" these days!!!! Oy! Lets hope the problem does in fact by some chance lie with my VPL Shunt (and not the LP Shunt) and maybe that help this brainlessness of mine!

New Drug - Approval process 
Anyone who is in the rare disease space knows new drugs and research take an exceedingly looonggg ssllloooowwwwwwwwwwwwwww time and drugs in general - rare disease or not very few make it through to actual patient approvals. This said the drug my Primary dr. has been working on for my case (with the BioTech company giving the drug under compassionate use as it's not approved yet) the paperwork she had to fill out was resubmitted to the BioTech company who approved the changes she made and now it is in the hands of my PCP's med center lawyers. Once they approve (I hope, without any other changes needed!) then my Primary dr. can submit it to the FDA. This process (which lol, if you read my blog I feel like i've probably written about before) can take about a month to get approved then.
Once we get FDA approval then the Pharmacist at SSM-Dean who works on my case has already been working with my Primary dr, (they've been discussing how they'll change the total recommended drug volume and run time for my case to be very similar to the Aldurazyme I get now., Other pts apparently go over 3hrs and 450ml volume (I think that was the normal total volume but I may be off a little). They want to keep the new drug at 150ml total and over 6hrs to prevent fluid overload so the Pharmacist will come up with an individual protocol for my case as soon as approval is granted.
 Per my team they don't expect that part will take long as this Pharmacist did the same with my Aldurazyme when I 1st started at SSM-Dean. It's awesome actually my whole team and the drug company have put so much thought in to this all already! The other thing they'll apparently have to do with the new infusion is monitor blood-glucose levels throughout the infusion but that shouldn't be to big a deal (I think just a finger stick similar to when I am on Coumadin and test INR).


Lastly my Church merger over the summer with 1 of the smaller sister Churches and so we called a 3rd "1/4 time" Pastor and also have a Vicar in training coming Sept 1st. The called Pastor is already helping my Church and our new Sister Church (Salem-Lowell) without Sunday School programs which has been awesome actually! Most who know me know i've really missed our old Pastor and the Sunday School mtngs we used to have throughout the year (was just helpful to be able to ask questions and in thinking through new ways to teach lessons).
Our 2 Churches are coordinating SS schedules so both programs will teach the same lesson each wk and then 1 or 2x throughout the year the 2 programs will sing together at each others Churches (St.John's kids will sing w/Salem for the 150th celebration in Oct). Kind of neat!
In-between everything else i've been busy working on beginning of the year stuff for this and SS in general but I tend to love it so I really have no complaints! All my Teachers from last year are coming back so that to is a bonus!
                                                 

We have a awesome God!
I'll try to update soon about Tues's shunt surgery. Please say a prayer if you wouldn't mind. I truly hope this gives answers!!!

Erica