The Road to Transplant

Many say the path to transplant is a long and winding road. Right now for me it feels like a roller-coaster. Just after Thanksgiving I was evaluated for a lung transplant at Duke Medical Center. It was a crazy and exhausting week of many tests. The surgeons felt I might be too early for transplant. The transplant pulmonologist said it might be time to get listed. I expected somewhere in between. My husband Randy & I returned to Indiana prepared that we might be leaving home again soon. We knew that when it was time to get listed that we would be OK with it even if our time on the transplant road was shorter than expected. Although in reality I’ve been on this road since my first evaluation in 1992. So I guess that’s a pretty good trip!

Right after we got home I noticed that my output (aka poop) in my colostomy had stopped. After trying many things at home, my physician told me to go to the emergency room so they could get a CT scan of my abdomen. This scared the heck out of me. I had surgery in May 2010 to resect a blocked small bowel portion. It resulted in a month long stay part of which was in ICU on BiPap assisted ventilation. I really wasn’t sure if I could do it again.

Just as we were getting ready to leave for the ER, Duke called. The transplant coordinator told me the news I least expected. Duke rejected me as a transplant candidate. I was shocked. I failed to meet their criteria due to esophageal aperistalsis (dismotility) and reflux. I felt like someone punched me in the stomach and drained all the blood from me simultaneously. I’ve worked so hard to stay on this journey and now a road block had suddenly appeared.

Luckily my bowel obstruction was only partial. I spend the next day curled up on the couch in some pain as the obstruction passed. My mom spent the day with me as we both dealt with the emotional turmoil over my rejection by Duke. Lots of tears were shed and by the end of the day we felt not exactly better but at least emotionally numb enough to deal with it.

By the next day I decided that curling up in a ball would not work as a life strategy long term. So I set about to find a solution to my problem. I put posts on nearly every CF and transplant forum and Facebook page I know. After checking far too frequently I finally got a good hit. A woman named Irene had been in a similar situation two years ago. She ended up at University of Pittsburgh Medical Center (UPMC) and suggested I message her so we could get connected. This meant the world to me and gave me hope again. A few others replied as well. It’s such an amazing thing to be able to find someone to talk to on an issue that is so narrowly focused (thank you internet!). Ilene and I talked a few days later. She answered so many of my questions and reassured me that UPMC might be a viable option. Her openness about her journey and willingness to help others along the transplant road make Ilene a great resource for others. We could use many more Ilenes in this world.

After talking to Ilene, I decided it was time to start contacting other centers. Hubby Randy said “Hey now you have another project to work on.” He knows me well enough to know that I need to be engaged in activity to keep sane. So for now I have been calling, faxing, and emailing various centers to find a good fit. I’m hopeful again and have faith something will work. I’m back on the road again and it feels good!