2nd listing official

I got the call from Spectrum Health April 17 of this week, I am officially listed for bilateral lungs at their facility. (was listed on Jan 16 at U of W--pretty close dates)
The repeat testing and meetings with the various departments over the last several weeks has been tiring and the raw emotions come screaming back.  Since most of the testing was done in Dec at Wisconsin I did not have to repeat the 'major testing'. Nonetheless, I still had to meet the Spectrum team, submit to another 15vials of blood, PFTs, ABGs, xrays.
I think its hard for both transplant centers to grasp the severity of my illness, yes they are doctors but most have never seen Autoimmune BO. I don't believe U of W has ever transplanted a patient with that diagnosis and I know Spectrum hasn't especially since they are new. The doctors they have are experienced but I'm finding that when you are not on oxygen they don't think you are as sick as you are.  Requiring oxygen is one of the points on the UNOS lung listing allocation score. It gets very technical but not being on oxygen does affect my current score (not as high).
Again, my disease is one of the small airways that shut off and scar (and your lungs have A LOT of small airways) and it doesn't affect the oxygen levels like the large airways.
I also find that the transplant centers that I have had experience with deal with severe emphysema, pulmonary fibrosis, and cystic fibrosis routinely and not my disease so I'm a bit of an anomaly.
I could easily qualify for disability with my health conditions, I choose to attempt to continue to work part-time and stay as productive as I can. Is it easy? HECK NO!!! My job is stressful and when the day is done I am physically exhausted. After 2-3days I am mentally exhausted.  There are days I literally drag myself out of bed, get dressed and then lay down again for a few minutes before I go to work.
So sometimes I feel because my drive is so strong that I get penalized a bit for my lung score--when they test my oxygen for 6minutes -they make you walk and see how far one can go. Because I walk more than 500ft in 6min I don't get a higher score.  I will tell you right now, if I had oxygen and 10monkeys on my back I would push myself to walk 500 ft.
Does it feel like my heart is pounding out of my chest in those 6minutes, does it feel like I have quicksand in my lungs in those 6minutes, do I feel lightheaded in those 6minutes???  A RESOUNDING YES to all those questions!!!!!!!!!!!
UNOS should develop a category/score for drive and how one attempts to stay as physically strong as they can in the face of adversity then mine would be through the roof.

Pray for perfectly matched young lungs -sooner rather than later.

Just what I needed to hear...

So I've been feeling a bit anxious about life happenings: more testing, more decisions, more stress and I opened my devotion called Jesus Today by Sarah Young (given to me by Jill at our church-KCC and this is what I read:
"Sometimes my Sovereign Hand--My control over your life-places you in humbling circumstances. You feel held down, held back, and powerless to change things.  You long to break free and feel in control of your life once again. Although this is an uncomfortable position, it is actually a good place to be.  Your discomfort awakens you from the slumber of routine and reminds you that I am in charge of your life.  It also presents you with an important choice: You can lash out at your circumstances-resenting My ways with you-or you can draw closer to Me.
   When you are suffering, your need for Me is greater than ever. The more you choose to come near Me, affirming your trust in Me, the more you can find hope in My unfailing love.  You can even learn to be joyful in hope while waiting in My Presence--where joy abounds.  Persevere in trusting Me, and I will eventually lift you up.  Meanwhile, cast all your anxiety on Me, knowing that I care for you affectionately and am watching over you continually."
"Be joyful in hope, patient in affliction, faithful in prayer" Romans 12:12

God always knows what we need to hear.  He is in control.

I meet the Spectrum transplant doc again Weds (finished testing this past Fri) and meet the surgeon Friday.  I should have a decision from Spectrum and dual-listing in the next week or so.
Pray those perfect lungs come.