I was in the middle of traveling when I received a message asking if I was in the St. Louis, Missouri area. My original intent had been to only visit a dear Cystic Fibrosis Warrior friend in Indiana and drive back to Texas the following day. However, in this instance it did not matter that I was on my way to spend the night at a hotel in Tennessee. When Miranda Hutson contacted me about a potential lunch with her in a state from which I was expecting to soon exit along Interstate 55, I made the instantaneous decision to alter my plans.

It was through a photo I found on social media several years ago that touched me more deeply than any other display of Cystic Fibrosis artwork I had ever seen to that point, and even to this day. 

At the time, I had no idea who this brave warrior was. I did not know the courageous person sitting on a bathroom counter, appearing afraid and vulnerable. Exposed. Clutching an oxygen tank, wrapped in several feet of oxygen tubing, as she stared seemingly desperate for relief.

Some time later, it was disclosed to me who that Cystic damsel in distress was. Miranda and I soon became Facebook friends, and communicated every now and again through that media. All the while, I had not the faintest hope that I could one day meet her. The text via Messenger received on my drive through the Midwest changed that, much to my thrill.

It was the appearance of dignity I viewed when I first saw this young lady in person last week, as she employed the services of the few feet high oxygen tank.  Similar in stature to the vessel she was gripping in the green-hued photo in which I had unknowingly become acquainted with this heroine. 

That previously mentioned picture was taken by her hospital room neighbor, Curtis, another Cystic Fibrosis patient, while they were both awaiting their first lung transplant at Barnes-Jewish Hospital nearly a decade ago.

Currently, Miranda is pending a second lung transplant.

As we picked at our midday meal at Jimmy John’s, her sandwich, my roast beef sub, I could not help but understand through our dialogue, her innate calm, as she presently confronts chronic lung rejection. 

Our lunch lasted for several hours, as I got to know this person whose strength I had admired for years. The topics we covered were many. Two of us with Cystic Fibrosis whose lives have been saved through the miracle of lung transplant. 

We shared an acceptance that few can have. It was a peaceful, serene, and unspeakable bond that existed between us that afternoon in that booth. A bond that no one viewing us could have faintly imagined.

Among what we talked about was her husband, Clint, who she's entirely grateful for, as he has guided her and upported her through the trials she's been through for far too long. Fully recognizing that it may very well be some time before another angel donor is found for her, not even a hint of panic or stress is to be found in her demeanor.

It was with the calm of someone who has CF, who knows what lies ahead of her, and is confident that she can, and will, withstand whatever may be down the road. Because she has been there before.

There is no doubt that I will meet Miranda again. Maybe it will be before she receives new lungs. 

Maybe our next encounter will take place subsequent to that. Looking at the big picture, the timing does not matter. 

My angel donor, Joni Marie, crossed my path in my time of need, gifting me with both lungs and a liver.

In this same vein, I know Miranda’s angel donor will perform the same in the perfect time. I longingly look forward to that day.

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.

 

**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***