I saw my lung nurse practitioner, Stacey this morning. I absolutely LOVE her! :) First I spent an hour with Eddy, my RT (respiratory therapist) for the day doing PFT's (Pulmonary Function Tests). My "normal" PFT's last about 20 minutes...this was the full blown, every PFT known to man and some even new to this "old hat experienced" girl, hour long PFT session. Thankfully, most RT's are upbeat as they "coach" you through getting the most out of you for each test. This next sentence is for those who have had PFT's done (or the parents that end up "doing the test with you" because you can't possibly NOT follow the RT's instructions: "And ready, deep breath!...and BLOW it out, keep it up, push it push it, come on little bit longer, keep going keep going, you can do it every last ounce of air out of your lungs, and deep breath in...."Good job" as you then hack your brains out and get whatever mucus decided it thought it wanted to be in your airways out and you get to do that 3 times and that's the "quick" test...at one point this morning between coughing and blowing my nose so much I told Eddy I was going to use up his entire box of kleenex. :) I had a test where they locked me in a pressurized tube (thankfully with clear glass doors so you could see very well) and measured my lung volume capacity. They then did a test where you breathe in certain ways, and they change the air to helium which you breathe in and they can measure how much it diffuses in your lungs and you hold your breath for 8 seconds then breathe out and they measure how much helium is in your breath and then by "simple" math calculations (for all you math lovers out there...ahem not me!) can determine if your lungs are getting enough oxygen to the rest of your body etc. I LOVE science and the body and it is absolutely fascinating how God designed every little detail about us. :)
Anyway, so my "baseline" PFT's have been around 85 (my FEV1...don't ask me what that stands for I just know it needs to be above 80 or I get more antibiotics!) for the past year...I get the "normal" PFT's every three months to stay on top of my lung function. My FEV1 was 82 before albuterol and post albuterol went up to 86 so with that, Praise the Lord, goodbye PICC line!!!!! :) :) :) :) For now anyway. There are still lots of docs to see to deal with all the other organs that are out of wack or could be causing me issues like, thyroid, pancreas, gall bladder, possible acid reflux, lungs (as usual), large intestines or liver....so the next few weeks and months will be jam packed with appointments, information, and tests and procedures.
Please pray:
1) God will guide me to the right doctors, we will get the right tests ordered at the right time and come up with the right treatment.
2) That all my doctors would communicate and the new docs would be willing to listen (and that I would graciously ask for certain tests that I have been told to ask for) and understand that while they have gone to Med school and been trained to diagnose, I have 28 years of experience of living with this disease. Tests don't always show what is going on and because my disease is so rare, there have been a million times I've heard the words "we don't really know what's going on, maybe take a painkiller if the pain gets bad, but there isn't much more we can do". Time after time after time after time. Obviously as humans, we will never know all the answers, only God does but pray that they would all be willing to communicate and learn from each other and put their heads together so to speak to come up with the best possible treatment plan for me.
3) Wisdom and discernment for Jordan and I. With all this information comes decisions we have to make and when you are living with a chronic illness and caring for someone with a chronic illness there are days when, although we know in our heads God is in complete control and believe that wholeheartedly, our hearts and souls are weak and we grow weary. I get "sick and tired of being sick and tired" and Jord just longs for me not to be in pain and we get tired of canceled plans and we get short with each other because we are both exhausted, physically and emotionally, and can't always think clearly. That's where you all come in to come alongside us. To help us see things we can't see in those moments, to pray for us, to hug us, to spur us on as Hebrews 10:24-25 says"And let us consider one another in order to stir up love and good works, 25 not forsaking the assembling of ourselves together, as is the manner of some, but exhorting one another, and so much the more as you see the Day approaching." O, we look forward to that Day when Christ comes back or takes us home, but until then we need all of you to help us "lay aside every weight, and the sin which so easily ensnares us, and let us run with endurance the race that is set before us, looking unto Jesus, the author and finisher of our faith, who for the joy that was set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God. For consider Him who endured such hostility from sinners against Himself, lest you become weary and discouraged in your souls." Hebrews 12:1-3
I chose Hebrews 12:1-3 as the subtitle for this blog because over the years those are the verses I have clung to over and over and over when I have gotten weary of the race God has called me to run. He reminds me that Christ endured far more than I can ever dream of enduring...for me, in my place, so that I have the hope of eternal life. This disease is in no way fun or pretty or what you dream of dealing with in life but it is the life God has chosen for me. And it is the best way I can glorify Him because He hasn't healed me and He continues to call me to patiently endure, proclaiming Jesus Christ and Him crucified as my only hope in the midst of the darkest valleys.
My sister caring for me in December of 2010
Slowly recovering, December 2010
In the Love of the Lamb,
Rachelle :)
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