Wednesday, February 13, 2013

Catching up, staying in, missing out

It's mid-February and I'm just now getting around to writing the first LeMOMade post of 2013. I could say that I've been too busy to write, but the truth is I've been hiding out in my house avoiding flu germs, sporting flannel PJs, and contemplating the "what if's" of my life. In late January, we headed back to the Cleveland Clinic for more testing and appointments as part of my lung transplant evaluation, and I'm still not done! To make a long story short, I'm closer to being listed as a transplant candidate, but the final decision is pending the outcome of more GI tests.

So once again, we wait.

Meanwhile, there are so many details to work out if the transplant is a go - travel, lodging, childcare arrangements, legal matters, caregiver plans, financial issues. The list goes on and on. At the same time, day to day life continues: kids need to be here or there, papers need to be signed, laundry washed, groceries bought, meals made, house cleaned . . . you get the idea. It's exhausting!

On top of all that, winter is not the best season for my health. Cold weather makes it difficult for me to breathe, and it flares up problems with my hands. This year has been especially hard because I require more oxygen to go out and about, and I need to avoid crowds because of my immune-suppressed body. I've missed gymnastics meets, soccer games, band concerts, recitals, church services, and more. The kids understand, but my heart breaks a little bit each time I say, "Mommy can't go because she is sick." It's sad to be left on the sidelines or stuck in the house. It is lonely too.

That's why the possibility of a lung transplant, although scary and overwhelming, fills me with hope. I might have a second chance at life - a life filled with simple pleasures or exciting adventures. Oh the things I could do with new lungs: walk up the stairs in my house without oxygen tubing trailing behind me, swim, bike, or hike with the kids, travel, ride a horse, climb a dune, skate, kick a soccer ball, or dance. Breath easy. Ahhh . . . that would be awesome!

If a successful transplant is in God's plan for me, the upcoming months will be busy with preparations. With the help of family and friends, we intend to work on a fundraising campaign to assist with the transplant-related costs that will not be covered by health insurance. We also plan to establish a household management team where we will seek volunteers to help out while I'm in Cleveland during the 2-3 month recovery period. More details about all of these activities will be coming soon in the event that I am listed. Stay tuned to this blog for updates.

For now, we seek your loving thoughts and prayers as this difficult journey continues.
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand, Isaiah 41:10

Love and God's blessings, Sue

ps. If you are not up to date on my story, please take some time to read the November post, Waiting, or My Story found on the right sidebar. Thank you.


  1. I would like to help anyway that I can. My prayer is for you to receive new lungs and a new life. Also that God would put all the pieces together for you and your family to be well cared for as well. God bless you with His peace and strength during this waiting period. Jeremiah 29:11
    For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

  2. You are very brave and I admire your faith and reliance on God to give you strength!

    Much love!
    (A member of team U4Sue!)

  3. Sue,
    I re-found your blog and am so excited to hear about this possibility for you...I'm praying for you and your family during this journey!!

    Lisa Sulzbach