You can not know someone through a relationship built from texts. Through messaging. From being friends on social media. You need to meet them. Hear their voice. Talk to them. This was my quest last week when I set out on a travel.

There were three fellow folks with Cystic Fibrosis who I wanted to meet. They are Warriors. I had known all three in one way or another for several years via Facebook. Facebook was not enough. I had to sit face to face with them over a lunch to hear their stories. And I did.

The first stop in the week-long, 3,000-plus mile journey in my two-door, pearl black Honda Civic was to Indiana. I met Amber in a modest café, hidden and nearly invisible among the rectangular, red-tarped various buildings. The setting was unreservedly appropriate, as this young lady, despite her enduring battles with CF, is the representation of modesty. Entering the café to my right was this girl, strength embodied, as she sat at a table, oxygen tank resting on the floor next to her.  With a smile that masks her challenges and symbolizes her bravery, this was who I had followed for many years on Facebook.

During our gathering that day, I learned of the climbs where CF had taken her. Amber is currently awaiting a lung transplant. I learned of her LAS (lung allocation score), which is a measurement not only of the severity of each candidates' illness, but also of the priority assigned to each lung transplant hopeful. This young lady’s LAS is significantly high, when assessed against the average LAS at a major lung transplant hospital in the U.S. 28% greater, in fact. That’s both good and bad. 

Good in that Amber’s score places her in line for priority ranking on the list. Bad for the obvious reasons and requires no characterization.

She ordered a chocolate-drizzled, crusted, pastry-type meal as a post-lunch dessert, but it was barely touched. When the body is challenged to breathe, oxygen intake ranks above appetite. A few stabs of the fork, a bite here and there, was all the danish was forced to endure that afternoon.

We talked about her Jeep. We talked about her wait for a donor, recognizing that regretfully and tragically, someone must pass before Amber can receive her lungs. We talked about how once she is awarded her second chance with new lungs from her unknown angel donor, she and her husband will embark on road trips of their own. Perhaps making a journey, herself, to visit me in Dallas, to grab a lunch there.

It was approaching 3:00 in the afternoon, and the café was soon closing. Our waitress stood to the side, behind a counter scanning a periodical, as she supervised a nearly empty café. Amber and I were the only occupants. Two individuals with Cystic Fibrosis sitting next to a wall at the far end of the eatery.

One utilizing the services of an oxygen tank with such supreme elegance. An elegance absolutely and starkly appreciated by anyone viewing her. The other was sitting across from her, sporting a blue paper Halyard procedure mask, with a brown cane at his side. In awe of the strength on full display from the young lady sitting across from him.

We wished the waitress a good day, as we exited the space. I walked Amber to her Jeep. Impressed with the ease and strength with which she lifted her oxygen tank into her ride, recognizing that I did not nearly have as much power as she currently has when I was pre-transplant. I watched her place herself into the driver’s seat, reverse the vehicle, and commence her journey back to her house. Feeling so thankful that she allowed me to spend time with her.

I pray that Amber’s donor is found in due time, just as my angel donor, Joni Marie, crossed my path some 21 months ago. Although it will be sad that a family will lose a loved one at that time, Amber’s angel donor will be creating a new life, a second chance for this wonderful young lady. And when that time comes, I know Amber will make her angel donor proud.  Without a doubt, this I know to be the truth.

 

**I engaged on my journey to tour the country and meet others with Cystic Fibrosis beginning in May 2019. My first visit was to Amber Goff in LaPorte, Indiana from my home in Dallas, Texas. I intended that to be a single road trip, a one-time adventure. However, I gained so much from my time with Amber, I was inspired to connect with more. As a result, I drove more than 24,000 miles in that year, and met 24 Cystic Fibrosis Warriors and their families. 

Respecting CF infection control policies and guidelines, understood by myself and those I visit, during this and every meeting, precautionary measures were taken.  Abiding by those guidelines, I wear a Medical Grade Facemask during the entire meeting, and maintain a distance of several feet between us, with no physical contact ever made.**

 

Help Others Live STRONGER and LONGER-

Rod Spadinger, 47, has Cystic Fibrosis. Born and raised in Hawaii, he moved to Dallas, Texas, where he underwent a double lung and liver transplant in August 2017. From the age of four, until he was diagnosed with Multiple Sclerosis as a junior in high school, he ran at least five miles a day, in order to keep his lungs clean. Rod’s exercise routine now consists nearly daily visits to the gym. He is on a continuing journey to connect with fellow Cystic Fibrosis patients throughout the United States, having driven over 24,000 miles in 2019 with these travels. Inspired by The Lord and his angel donor, Joni Marie, who provided him with her gifts of life, Rod published the memoirs of his post-transplant journey, and celebration of this second life, in the book “A Collection of 50 Stories Inspired by my Ange Donor, Joni Marie”. He is currently compiling a subsequent publication, primarily consisting of documenting his road trip encounters with fellow CF Warriors. Connect with Rod on Facebook under his name, and on Facebook at Cystic Fibrosis Artists; Two New Lungs, One New Liver – A Year and Beyond with Cystic Fibrosis; and Cystic Fibrosis Road Warrior – Ashleigh’s Life Foundation.

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation***