Earlier this week Steve and I headed back up to Cleveland for my monthly checkup. My numbers have fallen again and therefore my LAS (listing score) has gone up again. At this point I am in what is about the top 5% on the list for people waiting for a double lung transplant. I have been passed over multiple times at Cleveland because of my size. To put it in perspective lets say Cleveland did 5 transplants last week. Based on my blood type and antigen match I qualified to receive 4 of those lungs. However they were all too big. Basically I need a petite size small. A normal man sized set of lungs are 6.5-7L capacity. I need a 4.2-4.8 which is pretty small. So in a nutshell that is what we are waiting for. The perfect lungs.
My doctor thinks the transplant will happen very soon, especially with my LAS score increasing. She really wants me to think about being admitted ASAP. In the hospital I can do preop "rehab" (exercise) focus on my diet, nutrition and have a large amount of unlimited oxygen that I'm constantly having to refill here at home. My jobs here as wife, mom, social director and secretary at this point are leaving me exhausted to the point that I'm probably NOT resting enough, eating enough, or just taking good enough care of myself. Frankly at this point just packing lunches and folding the laundry leave me physically spent.
Obviously we weren't ready to stay in Cleveland, but the Dr strongly suggests we rethink this in 2 weeks. So the plan now is to sort of tie up loose ends here and head north in a few weeks if not sooner.
We are immensely blessed to have an amazing family, friend, community and church support system. My sister, Jolie and my Mom, Judy will be the ringleaders of this circus here while I am gone. Steve will be bouncing back and forth and I have a list made of school friends, family friends, neighbors and church folks who will be filling in the blanks. And if you see my kids or Steve give them an extra hug from me...they probably need it.
So, Please keep us in your prayers. We are continually praying for the perfect lungs at the perfect time - God's perfect plan. I'm not afraid. (I'm a little worried Jack won't pass 6th grade without me micromanaging him, and Riley will go to school with ratty hair, but that's another story... )
I am not afraid. I am ready. And so grateful that this is even an option.
We'll keep ya posted...
I'm so excited for your Mollie! You are so strong and such an amazing person! I will be praying for you, your family and all those doctors and lungs that will finally make you feel better. God is good all the time, and I know He will make this great! Praying also for calmness, trust and a blanket of protection around you. HUGS!!!!
ReplyDeleteMollie - the Tobia clan from Maryland is sending you tons of love and support! We are honored to be able to follow you on this journey. You should always know that you are not alone - and will never be alone. We will hold you in the light and keep a good thought. Be well and know peace.
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