Health Update: Sinus Surgery May 30th

     Yep, you read that right--came out of my ENT appointment with a sinus surgery date.  My understanding from my conversation with him in the hospital was that we MIGHT have to do surgery, but he walked in and basically started talking about getting a surgery date on the calendar and then scoped my sinuses and showed me what he's going to do--there's going to be a lot--he's basically going to open things up a lot more and so it's not going to be a fun surgery. For my medical friends and some language fun it's technically: "Bilateral frontal sinus exploratory, maxillary antrostomy, total ethmoidectomy and sphenoidectomy. Possible septoplasty." Say that even 1 time fast LOL :)  Out of all my 30 plus surgeries, sinus surgeries are my least favorite.  **Warning--a little descriptive so if you have a weak stomach you may want to skip the next few sentences** Why I don't like sinus surgeries is because during surgery the blood runs down the back of your throat and into your stomach.  Your first part of recovery and waking up you spend throwing up brown blood, which makes your nose bleed more and starts a vicious cycle.  Then you stop throwing up, but every time you cough it makes it worse--and I'm not exactly someone who doesn't cough--it's what I do 24/7 365---and I have to do treatments that shake my entire body to clear my lungs--which will definitely *NOT* be fun post surgery.

     I also saw my PCP (Primary Care Physician) yesterday and she said my right base sounded a little dim, meaning I'm not moving air as good in that area, which isn't *normal* for me in the past, but not sure if that's part of my *new normal* or not.  Would love prayer for the lung doctor situation--there is a new doctor that is coming and going to follow me in clinic but there have been some hiccups and she doesn't have a schedule yet.  The doctor that was seeing me is doing more inpatient stuff, so have a call into the clinic to find out who can see me in the meantime because I have to do a full set of Pulmonary Function Tests now that I'm not actively sick and get cleared for surgery, and come up with a plan for the surgery--I will likely be admitted as surgery is hard on your lungs.  I'm not sure if they will just want to observe me or if they will want to put me on a preventative course of antibiotics to keep things from getting out of control before it starts, but obviously any antibiotics come with risk with me.  I also need to have a port placed prior to surgery, which is a minor surgery in and of itself.  That way I don't have to get another PICC line and have the risk of infection again.  There is still a risk of infection with the port when it's accessed but not near as much as with the PICC lines.  (If you would like to learn what the difference is between the two, here is a link to a PICC line description and here is a link to a Port a cath (what they use for chemotherapy).  I had a port for 5 years, but it clotted and had to be removed in 2012.

     I haven't really had time to process stuff yet--I literally got home from errands after the doctor's appointment, started treatments and this update.  Surgeries are never fun, but they are a reality of PCD.  This is far from my first (I was 11 months old with my first surgery--a set of ear tubes) and it certainly won't be my last.  As I get older and the disease progresses, things also get a lot trickier.  I'm thankful there is time to prepare and to get all the logistics together before surgery, but at the same time, I'm disappointed because it seems like *just* enough time to get to feeling better and back to my baseline just in time to be knocked down again.  Those are the thoughts I need to guard my heart against--and with truth from God's Word.  This didn't surprise Him and He knows all the details and what is truly BEST for me--physically and spiritually.  This may not be the beginning of the summer I had planned, but it's obviously what God wants for me.  I'm sure I'll have my tears between now and then but in the end, God's grace is sufficient--even for the most complicated details of bringing a good, safe, comprehensive surgery plan together--and the hours I will likely spend on the phone lol.

     Thank you, once again, for all the prayers, love, and support!  Jord and I could not walk this road without all of you around us!

     In His Mighty Grip,
Rachelle :)

Treatment time :)