I finally moved to my new Apt about 2wks ago. - I like (surprisingly) being back in BD and nice to close to multiple (better) grocery stores + a hop/skip (less, lol) to the hwy to get to Madison and really only about 15more mins to get to Milw. so that's still not bad either. My cats have finally settled in and I have new critters here to (squirrels and birds =) ). My nephew loves all the kids at this Apt complex (is much bigger but also much quieter here) and my backyard is pretty big so Z has lots of area to run around and explore and bird hunt (+ the other kids of which he already made friends with a few last wknd).
Albeit it's only been about 2 wks but when I 1st moved to this new Apt and still on occasion I think about all I went through while living in Juneau (in BD now). All the surgeries (3 Open Heart surgeries, 40-some shunt/spine surgeries, 3 hand surgeries, and probably something I am forgetting). Several of my nieces and nephews where born while I lived in Juneau, I started teaching Sunday School at St.John's there (7 yrs I think this yr!?!!?) and now I coordinate or run the SS program (I have plenty of people I can turn to for back up on this and my SS Teachers are great if I ask them to help with something or something we need to do).
My Grey was just a kitten - a baby teeny, tiny kitten when I lived there and her Mom (my Ally cat, I had to have her put to sleep last yr =/ ) was a tiny, stray i'd just brought in right before I moved to that Apt. - I found Dr.Bragg and my current PCP amongst several others on my current time while living there.
The many trips to Milw for ERT (Infusion) and then later to Madison for my weekly infusion from that Apt. - The many times my Dad (or my brother) would have to come and help with my cars (I had atleast 3 while I lived in Juneau - the 02' Saturn, The Grand Am', and 01' Alero, then my last 11' Aveo before buying my current 16' Chevy Cruz. A car I swore i'd never spend that much $$ on! Oy, but I like it and don't generally mind the payments to much. I have it almost 1/2 paid off 6mo in so that's a bonus (so grateful for the part time work I have. that to I started 7 yrs ago while living in Juneau., in fact I was in-patient when the Foundation contacted me about possibly working for them after my previous work (APF) had just recently shut down. - So many memories!
It kind of makes me wonder what all will transpire while at this Apt. - More good memories and changes I hope amongst all the medical stuff and hopefully no losses to my medical team!
Pulmonary, I had the 3mo CT Scan follow up (Lung dr, Team monitoring the nodules that have grown the past year or so on CT Scans and 3mo ago the Radiologist reading the report recommended these be repeated again at a 3mo interval to monitor any changes).
Anyways so my Pulmonary (Lung) dr., messaged me back a few days after the scans and the 2 nodules had grown again albeit they are still very small. Because of the area they area growing in (L upper lung lobe and R infrahilar nodule) - Honestly I have pretty much no idea what it means other than they are still small but the changes where 7mm 3mo ago to 8mm now and 5mm 10/15/18. The R nodule measured 14mm (axial series) and 11mm up to 18mm (craniocaudal dimension) 3mo ago
previously 13mm. Are you confused yet? Lol, me to! (laughing b/c for real). There are other nodules apparently per the scan but unchanged so those aren't of concern.
It is very possible these 2 growrths are infection related to the humira I take.
So the plan is 1. 2 specialized urine tests to check for fungal infections (my Primary dr. put in the order for my Lung dr and will get these done next wk when at infusion). 2. Dr.Biller feels a bronchoscopy (basically a scope of lungs) is also warranted though b/c the area these are in is very hard to access they plan is to instead start with a saline flush of 1 of the areas and then test that flushed saline via lab to check for infection.
If those are negative I am not sure what happens next but will worry about that all when/or if needed (possible things could be but less likely cancer, infection, and may have been 1 other thing).
Right now there's just enough other things to deal with!
UofMn AND headed to UofMn tmrw for the longitudinal MPS I study to so enough other things to get through 1st. (I think this is the last visit) finish that study up. Basically a 1/2 day of realllyyyyyyyy boring testing. Like mind numbingly boring testing!
But if we as MPS I Adults don't do it then how do we expect Drs/Researchers to ever understand our brain and memory issues? So thus I have done the study the past few years and will do the last study visit. Hopefully honestly this information will be useful anyways for the new drug my PCP and the BioTech company are working to get approval for. While in Mn i'll see a few of my friends so that atleast is a fun part.
Before the upcoming hernia surgery (Aug. 1st), and Pulmonary-Bronchoscopy I am going to my most very favorite place with family. I have pre-op late next wk but then convinced family we should go to Bay Beach (Amusement Park, Green Bay) this yr. We haven't been there in a year or 2 and I absolutely LOVE that place so am super excited!!! I am like a kid in a candy shop when it comes to carnival type rides which is what Bay Beach is (rides, rides, rides!!). Can't wait!!
General Surgery, Hernias - This has been a little difficult bowel wise though is this related to the hernias? Guess won't really know till after the surgery and even that will likely take atleast a few days as I am sure it will be atleast some painful and all the air they place in ones bowel (I think? Given it's an open surgery?) with surgery and anesthesia meds will likely screw up bowels even more. Such joy. I can hardly wait. I seriously pray just about every day if not every day (amongst other stuff and not always just asking God for help but thanking him to) that something be sorted out soon with atleast one of my issues. The bowel stuff? Headaches (over a year later and no closer to an answer. Still waiting on this stupid intracranial pressure monitoring device =0/ ) or other issues but those 2 are the top things at the moment and the most affect on my daily life. I pray this surgery helps the stomach stuff.
Cardiology - Heart monitoring
I have been wearing a newer heart monitoring device (similar to the Zio heart monitor i've had at other times) the past 2wks though have to wear it about 5 more days as there where about 5 days the monitor came off and I had to wait for new patches to adhere the monitor to my skin with. The Zio definetly works easier AND has a button on it you can just press if there are any episodes. This one does now have that and so you have to carry a little paper booklet around which I have not multiple times (like when I was moving). Kind of annoying! Makes ya appreciate those things that are easier though. =)
Thanks for stopping by,
Erica
No comments:
Post a Comment