I view the process of any transplant as a miracle. Particularly a lung transplant. Perhaps it is because I underwent such a course. It is due to that procedure, I am still here. 

Perhaps it is because I know of others who have had lung transplants. It is due to that procedure, they are still here.

And perhaps it is because I know of others who did not have lung transplants. It is due to the absence of that procedure, they are no longer here.

This accounts for why a 3,300 mile, week-long voyage I drove in May 2019, had such a profound effect on me. 

The adventure was remarkable. It was marvelous because it allowed me to speak with and meet three young ladies, three brave Cystic Fibrosis Warriors, each in different and very distinct stations in their journey on the lung transplant promenade. 

The first young lady I lunched with lives in La Porte, Indiana, and is pending a lung transplant. Medical statistics would say that her condition is serious. And it is. However, when engaging in a dialogue with her, there is no panic in her demeanor. No stress. Maybe it is because Amber Goff has battled Cystic Fibrosis all her life, and this is just one more obstacle of many that she’s confident she will overcome. 

Allow her to tell you her plans post-transplant, and you will understand.

The second young lady l dined with over sandwiches resides some 330 miles west of Amber. This Warrior experienced her first transplant ten years ago, and is now on the waitlist for a second. Again. Confidence. Maybe it is because Miranda Hutson has been combating rejection of the initially transplanted lungs for most of the years since the gift was graciously received from her first angel donor, which has served to compound her strength and tenacity throughout. 

The third young lady is in a state to the west, in the middle of the country. Rae is a Warrior beyond measure. Having not even commenced her fourth decade of life, she has weathered four transplants. 

A heart transplant. A heart and double lung transplant. And another lung transplant. This CF Warrior displays nothing but sheer confidence. Maybe it is because she has fought three transplant battles and has won each one, with her will to fight, live, and survive proliferating at each round.

County Road 1500 NE, 120th Road are among the several paths I traveled during this pilgrimage. I cannot help but think that my angel donor, Joni Marie, was there with me. With that, I do not feel that those dirt county roads are necessarily what brought me to visit with these three courageous Warriors. Might it be possible that Joni Marie was the one who graced and guided my journey? Encouraging me to make the most of the second chance that she provided?

The opportunity of meeting one person with Cystic Fibrosis is indeed special. The excitement of meeting three is incredible. 

Three situations. Three stories. Three inspirations. 

Entirely magical.

 

Note – This post was written as Miranda was awaiting her second lung transplant. I am thrilled to report that she received her second gift of life in the form of two fresh lungs, donated by an angel in St. Louis, Missouri on July 29, 2019. Also since this original writing, Rae has returned to work. She is currently employed as a Perfusion Specialist and an adjunct professor of Health Sciences. 

Rae also teaches some courses in science and math. A CF Warrior, indeed.

 

**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. Rod also founded a CF focused non-profit organization, Ashleigh’s Life Foundation (www.ashleighs.org).  Connect with him 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***