Sunday, April 21, 2013

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.


  1. Would love to see you continue to work to stay closely connected to the medical community. So grateful that God has opened to door so a flight may not be necessary to receive the lungs. Continuing to pray for you daily.

  2. It may not be helping your score any, but staying as active and healthy as you are is going to help a LOT when you are recovering from your transplant! Keep it up. =)