Adventures at UNC :)

Crazy, fast, up, down, and all around could describe our day.  I'm not a particularly organized person (I WANT to be but somehow I get organized and it all gets unorganized in a matter of time...ladies from GBC women's ministry...I need to heed my own tip: "Just do it!" LOL)  Through a myriad of events, thankfully still under the sovereign hand of a God who is a God of order (just look at the Universe...good thing I didn't have a hand in it!!!), I left records, maps of the UNC campus, and directions at home in Phoenix.  Thanks to Paulina, Dr. Cohen's (my ENT) WONDERFUL medical assistant, I was able to have my recent records emailed last night and I wrote out directions from mapquest, my appointments for the day and thought we were good to go.

I suppose there is truly a reason (albeit I begrudgingly admit this!) that Jordan fires me as his navigator/copilot every time we go somewhere.  I believe his exact words to my Mom before we left were, "If she's your co-pilot, your hosed!"  Thankfully, I married a loving and forgiving husband, but lets just say road trips or going new places together can be very sanctifying to say the least...this morning was no different.

Long story short (maybe!), we finally made it, but not before I was in tears and late for my first appointment of the day.  Thankfully, Katie was super understanding and got my Nasal Nitric Oxide measured.  (You can refer to the PCD website HERE for more details on medical lingo etc.)  I will do more detailed posts at a later date, but for now I'm going to be brief (for me!) so I can get some rest.  :)

Next, we were whisked off to get Pulmonary Function Tests (PFT's...you can google those) and then spent over an hour with one of my very favorite doctors in the world, Dr. Michael Knowles (Click here to find out more about one of my very favorite people in the world!!).  I have some fun pictures to come when I get home!  Going to bullet point the medical things you can be praying for:

1) Inflamed airways: Dr. Knowles explained it like when you get a sunburn your skin stays red, so we need to get the inflammation under control.

2) Hyper Thyroid: Blood work from Phoenix shows hyper thyroid which could explain a lot (weight loss and lots of other things that I have had issues with over the years.)  I've had blood work done investigating this before, but it never came back out of range.  I need to get an Endocrinologist (Thyroid doc) when I get home and get an "Uptake scan" done ASAP and get on top of that.

3) Coughing/Possible Reflux could be causing some of the nausea/vomiting issues.  Barium swallow test to determine reflux etc, and will be following up with a GI doc at home.

4) Vitamin K low: Explains super easy bruising and some other stuff.  Either over growth of "bad" bacteria leeching it or not allowing my body to absorb nutrients (adding to weight loss issue as well), so got more extensive blood work done today (yay more needle sticks!) to test liver enzyme levels (your liver is a factory for the blood clotting mechanism, or part of it, and needs Vitamin K to complete the process) and other issues etc.  Eating lots more green leafy veggies and will be getting a Vitamin K supplement as well.

5) Multiple sputum cultures to go back to UNC over next couple of days while we are here so they get good samples and can see what's really growing besides the Pseudamonas: Aspergillus, NTM or both or neither or something else. 

There is a lot going on here so we don't want to change multiple things and work on everything at once and shock my body and not know which side is up.  Prayer requests in the midst of all of  this:

 1) Praise I should be able to still attend PCD conference because I've been on IV antibiotics for a week, will wear a mask, and not hug/touch anyone with PCD so I don't compromise them.

2) Pray for continued sustaining grace from our merciful God; doing ok, but energy definitely low and that even if I "feel energetic" in the morning after a good night's rest that I would be wise with my time and give my body the time it needs to heal. (Thanking God for the Mitford book Marilyn let me borrow...it will be a good way to keep me in bed all day!)

3) Pray for wisdom with all these tests/doctors visits/follow ups.  My Mom pointed out that I cannot afford to not be organized in this area--it is critical to my health.  Jordan has brought this to me before (more with house stuff but it still applies) so whether I'm an "organized" person or not, I need to confess the sin, stop the excuses, and "just do it" like I said so many months ago.  (Allie, I may be having a date with you!!!)  :)  (Smallgroup this is open for accountability...I need it!)

4) Pray that God would "use this ransomed life in any way You choose" as the Sovereign Grace song goes.  It is truly my heart's desire and I will be meeting people that suffer physically just like me over the next couple of days.  In His providence, I was scrolling through all the Resolved messages I had downloaded on my IPOD and listened to one by Randy Alcorn on heaven.  The one I listened to today was the intro to that Resolved conference (theme: Heaven and Hell)  by Rick Holland on "Death and Dying."  Respiratory diseases are the #4 killer in America (thanks for the research Rick!).  We all will die from something and Jesus Christ is the ONLY remedy for the eternal death we all deserve because of our sin.

I will be in contact with many people whose lives have been touched by respiratory disease every single day.  Their families hurt to watch them suffer, they hurt physically constantly (there is always SOMETHING going on in my body causing some sort of pain...big or little but its there...) and some have lost loved ones to PCD or will lose them to PCD or are hanging onto this precarious life by a thread.  Pray that the Spirit would give me wisdom to know when to speak words of comfort, encouragement, the truth (boldly in love), or just to develop relationships and love others as He has loved me and been so incredibly longsuffering with His (at times stubborn) child.

But praise be to God I am that: His adopted child because Jesus Christ absorbed every drop of God's wrath on the cross to pay a debt I could not pay for my sins so that this suffering I feel right this second is the closest I will EVER get to hell.  Unbeliever take heed: if you reject Christ as Savior this sin cursed world will be the closest you will ever get to heaven.  As Rick Holland said, our culture is very sheltered from death and dying...having a chronic disease rips a little of that shelter away and my body longs for heaven even at 28.  Most people my age don't even begin to think about death or dying but it is something we ALL have to face at some point or another.  Jord and I (and all of my family and close friends) are so much closer because there have already been several times where I have come pretty close to death (multiple posts for other days!) and we have all had to face mortality together.  God still wants me here and has His purposes for this ransomed life and I long to glorify Him with every breath He gives me...and those words have a much heavier meaning when there are times you struggle for every breath.  He is good, He is gracious, He is merciful, He is loving, He is patient, He is kind, He is longsuffering.  But He is also just and holy: look at how He crushed His Son because of sin...sin HAS to be paid for by someone:  Will it be you for eternity in hell or will you heed His call and receive Christ's gracious unfathomable gift on the cross?

In His Mighty Grip and Everlasting Arms,
Rachelle :)