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 left...is 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!

Thursday, January 12, 2017

Heard from the scheduler at UCLA's transplant center today (1/10/17)!
I'll be going down the last week of February / first week of March for several tests and interviews. The transplant team (at least 8-9 people) meets weekly to discuss transplant candidates and prioritize their list placement.
So, shortly after my visit I will know whether I need to relocate to Los Angeles (temporarily), or whether they want me to wait in Oregon. Either way, we should know in a few weeks!
Once I get listed, then it becomes a waiting game until donor lungs (that are a match for me) become available.  Could be weeks, could be months. We're praying for sooner!
Thanks to all for the prayers, encouragement and financial support!
The RedBasket campaign (fundraising) ends February 12th.
Please check it out if you haven't already...we're already at 71% of the target!
https://redbasket.org/1194/support-for-steve