Idiopathic Pulmonary Fibrosis, Lung Transplant

Woman Smiling

The Trip I Hadn't Expected

Bethany Sprague was a healthy mom of two working as a physical therapist in St. Louis when she started experiencing a dry cough that wouldn’t go away for months. She was diagnosed with idiopathic pulmonary fibrosis in 2010 and would soon begin her lung transplant journey. This is her story.

By the following summer, my difficulties increased and I was put on oxygen in August.  For several months, I had been in denial, not wanting to go on oxygen and was getting more dizzy and short of breath with activity.  In September, I woke up one morning and had literally "crashed."  No amount of oxygen was helping me and I was rushed to the hospital.  My breathing was so tiring that I was asked if I wanted to go under voluntary sedation.  Not breathing and miserable, I said a "see you later" to my children and was sedated.  

Luckily, for me, my pulmonary and internal medicine doctors had kept me up on exams and tests needed for going on the lung transplant waiting list.  I was not listed at the time of admission.  With the help of my family, all my records were pooled and I was an emergent listing in a couple of days.  

Ten or so days passed. Just in time, lungs became available and my transplant took place.  Within 24 hours, the lung team determined the lungs were too large.  I went back into surgery and had my lungs downsized.  It's amazing that they can do this.  

Many days and many complications

I had a tracheostomy, a vocal cord nerve damaged, no muscle strength, difficulty coughing (my right diaphragm had been damaged) and a drop foot.  After 53 days of hospitalization and rehabilitation combined, I finally went home.

The journey did not end there.  I had outpatient pulmonary rehabilitation.  I could barely crawl up on the treadmill my first session.  I worked hard and walked out my last session ecstatic I had come as far as I had.  My vocal nerve returned.  I continued to focus on taking care of my body and my new lungs.  I focused on what I wanted to do in the future and tried hard not to dwell on the rough course I had survived.  One of my goals was to move back to the east coast to be near family.  

April 2, 2012, I reached my goal.  I moved to Philadelphia and Penn Transplant Institute lung team took on my care.  I am doing most everything I want to do.  In my free time I volunteer at the Clyde F. Barker Transplant House.  Mentoring is also one of my goals and I have tried to make contact with others whose post op course was also difficult.  I am still on the board for the Second Wind Transplant Association in St. Louis (long distance) and write articles for the newsletter.  It feels good to pay it forward.

Words of encouragement

Yes, I would do it again!  I am so happy for every additional moment I have received and so grateful to my donor.  Also, it is not always a smooth road.  But, lung teams like Penn Transplant are at the top of lung care.  If you do have complications, they refer you to other teams that are also at the top.  These teams are at the forefront of the research and care of lung transplant patients.  As a team, they want you to do well and survive to enjoy your life.

Everyone's journey is different.  I wish you all the best with your journey.  Just know, there are others that have been through the challenges of lung transplant before you and are enjoying a life they would not have had!

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