One of our spots!

One of our spots!
Oregon Coast 2016

Sunday, January 22, 2017

"363" - A Dose of Reality!

In preparation for my pre-transplant evaluation coming up in 5 weeks, I was doing some research this morning to further acquaint myself with the multi-step process. I was gathering more info related to the organ donation process, since my life will depend (and be extended) on another human losing their life. Sobering thought.

"UNOS" is the United Network for Organ Sharing - the network that is responsible for matching and distributing ALL organ donations (kidney, heart, lung, etc.). On their extensive website, there are six "calculators" - designed to determine things like life expectancies with certain diseases, urgency/need for organ transplants, etc. One of the calculators is called the "LAS" Calculator - or Lung Allocation Score. This calculator, while not ultimately conclusive, give a rough (emphasis on rough) estimate on one's life expectancy - based on several factors (age, type of lung disease, current lung function and capacity, etc.). The calculator spits out three numbers: an LAS score, a "Waitlist Urgency Measure", and a "Post-Transplant Survival Measure".
The one that stood out to me was the Waitlist Urgency Measure. This score is given in the number of days the patient is currently expected to live if NO transplant occurs during that time span.
Mine was "363".
That's how many days I am currently expected to live if I don't get a transplant.

Now, granted, it's just a tool to help determine the urgency/need for the operation - and there were several factors that were averaged by the calculator. They emphasise that it is NOT definitive - just a "ballpark" figure. Each individual is different, and can actually change daily, based on one's current situation (I could get a bad cold, pneumonia, etc.).

I know my days are numbered (all of ours are!) - but to actually see a number of potential days quite the reality check!
I have very well-meaning and lovely people ask me (and my family) how I'm doing, and hoping for an answer that indicates I'm getting better. The fact is, I will never get better - I am getting worse, albeit slowly (for now).

Getting a transplant doesn't mean my life will get back to "normal", but most likely it will extend my life and allow me to breathe better. Once I have the operation, I will be on over 12 medications that will majorly suppress my immune system - for the rest of my life. I will ALWAYS have to be careful and protect myself (wearing masks, staying away from crowds and people that are sick). But I will be ALIVE and, hopefully, able to continue life with my wife, travel, ministry, music, grandparenting, etc.!

That's the goal. That's the purpose of going forward - making the most of whatever time I have left.
Whether I have 363 days or 3630 (or more!), I will strive to make the most of them!


  1. Steve, you are such an honorable man of God, husband, father, son, friend to so many. I truly appreciate all you have dug in this season in allowing all of to number our days and love one another as He has and STILL does. ⭐️ You are a shining star in my book, so caring and strong in a time most would be saddened and weak. Takes me to a scripture: when you/ I are weak, you/I are strong. Praying for that 6360 days plus in serving the Lords purpose and glory ����


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