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.

One of those weeks...

It was one of those weeks where disappointment, stress, and life collides.

I think I have the final tests that Spectrum requires finally figured out and scheduled for this upcoming Friday. I will meet the transplant surgeon the following Friday with repeat lung function testing the day before.
Once all testing is complete, the transplant team will review everything and decide if they want to list me at Spectrum. I anticipate the decision in the next 2-3wks.
Going through this again is difficult and it will be nice when all is done and plans "finalized".
Today is Easter and normally we spend it at my mom's-instead we were here. (I missed last yr as I had pneumonia) I really cannot leave the city of GR as one never knows when 'the call' will come. I need to be able to get to my plane within a hour of receiving the call and make it to Wisconisin in the allotted time. It is an approximate 1.15-1.30 hr flight in my reserved Cessna. Flying west across the lake there is always opposing winds and anyone around this area knows weather in general can change in an instant.
So I'm really tied down to this area which I don't think people realize.
It is times like this where I feel trapped, there is no escape, Greg and I can't take a weekend away, and there are certainly no future vacation plans.  We would love to be able to plan a Disney trip with our 5yr old but that is on hold. This sucks!
The uncertainty of my life is so heavy at times. Instead of a Disney trip for Eric, I'm thinking of writing cards to him for future b-day/special occasions in case mommy isn't there. How wrong does that seem?!?!?
AAAAAAAAAAAAAAAARGGGGGGGGGGGGGHHHHHHHHHH!!!!!!!!
I tell myself, one day at a time and keep your head up but sometimes I just want to bury my head in my comfy blankies and hide. But life does not stop and neither will I.


P.S.
Thank you Heidi and Becky for offering their families for Easter celebration. Both tried a few times to have us over today but I declined, I needed some time to recharge my batteries. I can't say I feel totally recharged but will keep trying.

Prayers everywhere!

This is a children's home (Faith in Deeds) in India. My friend Liz gave me this framed pic and it really touched. How sweet is it knowing that children across the world are praying for me?!!? That is awesome and was a very touching gift.
Heres their facebook link if interested in checking it out further: http://www.facebook.com/pages/Faith-In-Deeds-USA/339566304349

2nd listing?

Greg and I met with some of the team at Spectrum this past Thursday. Some of you may know that they have been doing heart transplants for the past few yrs but just recently in the past few mos became credentialed through UNOS for lung transplants.




Michigan is in a different region than Wisconsin so if I can list in another region I would increase my chances to get lungs.
Spectrum has recruited an A+ team for their lung program and I've done a lot of research. The facility itself just has not been doing transplants that long.  Their are pros and cons to every facility and ultimately it comes down to the surgeon and transplant team.  I will have an incision from one side of my chest to the other and I really want skilled hands making that incision.
My meetings this past Thursday were with financial, transplant coordinator, MSW, dietitian, a pharmacist, Infectious Disease, and more labs. I was a little disappointed that some I met with seemed unaware that I was already listed or that I had already endured a battery of tests this past Dec.
Spectrum's team wants an abd/pelvis CT and a test to check your diaphragm's function--Wisc does not require these so this is more testing needed.
I've had so much radiation the past few yrs I worry about that and how that increases your cancer risk.
I still have not met the surgeon at Spectrum and he is going back to England for the upcoming wk so the team will meet the following wk.
I did learn more about the post-transplant meds from the pharmacist meeting and how most of them increase your risk for diabetes, hypertension, and high cholesterol--oh boy! And these meds are lifelong and expensive! Each center does post-transplant meds a bit differently as well.
Also these meds increase your risk for kidney failure, skin cancer, and B-Lymphomas--another Oh boy!!!
This is the info that makes me want to throw up. Do I continue? I feel I have little choice as my lungs are failing and there is no crystal ball to show my future.
So, I will trudge along this surreal experience and remember the Tim Tebow quote in my earlier blog.
Pray for perfectly matched, healthy lungs and that I can tackle this demon and come out successful on the other side.

THANK YOU!!

In the last week I have made my blog known, created a facebook page for networking,  and am currently working on another type of facebook platform.
I am overwhelmed with the support!
The t-shirts are selling very well at my work and am looking forward to seeing most everyone wear their shirt to work every Tues starting in April which is National Donor Month.
I want to personally express my gratitude here to all that are reading my blog and sending their love. If I could personally give you a hug then I would.
Fundraisers locally are currently being worked on, it is a lot of work and they wouldn't be possible without the help of my support system.
So, a big THANK YOU to Mehgan, Stuursy, Suzor, Tara, Julie, and Becky for doing what you are doing and researching so many avenues.
This journey will take a village of support and know your efforts do not go unnoticed.
I know many of you have expressed an interest to help and we will definitely need you.
It is tremendously hard for me to accept help, I'm use to doing the helping but I'm learning how to accept help.  Be patient with me.

I was recently talking with my son and the subjects of doctors came up (probably because I'm going to one every other wk). Eric said he wanted to be a doctor, I asked why.
His matter of fact response was, "To help mommy".  Of course I shed some tears as he looks at me strangely and continues to draw.  He doesn't understand the magnitude of what is occurring with me but he knows he needs 'to help his mommy.'
So to all of you that are helping Eric's mommy, Thank you from the bottom of my heart.

How to be an organ donor

Here's the link to sign up to be an organ donor in Michigan,

https://services.sos.state.mi.us/OrganDonor/Pages/Registry.aspx

Thanks for considering this important yet difficult decision.


- "Blessed are those who can give without remembering and take without forgetting." Elizabeth Bibesco

- "Life's most urgent question is: What are you doing for others?"
Martin Luther King, Jr.