NACFC Session Discusses Lung Transplant as an Option for Advanced Lung Disease

The video of the second plenary at this year's North American Cystic Fibrosis Conference was focused on lung transplantation and is now available to watch online. Having had a lung transplant and as one of the people with CF featured in the video, this particular session had a personal meaning for me.

| 3 min read
Mindy-Ladd-Headshot
Mindy Ladd
Mindy-Ladd-Joe-Pilewski-NACFC-Featured-Rectangle

I am a 43-year-old with cystic fibrosis who has had a double lung transplant, and I am doing very well! I am lucky to be here and even luckier to have had such a wonderful medical team supporting me throughout my journey.

Please watch the video of this year's North American Cystic Fibrosis Conference (NACFC) second plenary as Dr. Joe Pilewski discusses the difficult but necessary conversations about transplant. I feel it is extremely important for all of those involved in a CF patient's life, from the clinicians to the family members, to be able to discuss the possibility of transplant and what that will mean.

Dr. Pilewski speaks of the different steps that should be taken during the transplant process, and the importance of each step in having a positive outcome. He discusses the benefits of starting the transplant conversation early and gives examples of patients -- like me and others -- who have been placed on the list.

Sharing my experience about how it felt to have the transplant discussion and being listed was extremely important to me because I had already been a part of the transplant process. My brother, Joe, had a transplant 15 years prior to mine. Being there for support and being there as a patient on the other side are two very different things and the emotions involved are also very different.

I also feel it is extremely important for the CF care center team to advocate for their patients. You will see in my video how lucky I have been to have such a wonderful CF care team that worked to find a transplant facility.

Not only did my CF care team help me find a transplant center, but they also needed to make sure that the transplant center would be open to having me as a patient with all of my bugs! I feel a huge part of my continued success has been because both the University of Pittsburgh Medical Center (UPMC), where I had my transplant, and the University of North Carolina (UNC) were willing to see me as an individual and work together to maintain my health both pre- and post-transplant. In fact, after one center wouldn't list me as a transplant candidate, my CF care team went to bat for me with the transplant team -- at the 2009 NACFC -- so I could be listed.

I am so very grateful to the wonderful doctors who have made my life better, such as Ray Coakley and Joe Pilewski, both of their teams at UNC and UPMC, and all of my family and friends who have helped keep me alive and able to do all of the things I love like tennis, pilates, and most importantly, being with my amazing family. Thank you for the miracle of new lungs!

You can see a video of the entire plenary session here.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

Share this article
Topics
Lung Transplantation | North American CF Conference
Mindy-Ladd-Headshot

Diagnosed at birth with cystic fibrosis, Mindy grew up in Ohio. She met her husband of 18 years in college and pursued a full-time career until the birth of her daughter. Although Mindy lived most of her life in Ohio, Mindy, her husband, Mike, and their 16-year-old daughter, Abby, have lived in North Carolina for the past 12 years. In 2010, Mindy underwent a double-lung transplant and has been doing very well since. She now gets to do all the activities she loves, including pilates, yoga, tennis, and -- most importantly -- spending time with and caring for her family again.

Recent Community Posts
The Challenges of Pregnancy With CF
Blog | 6 min read
Embracing the Realities of Aging With CF
Blog | 6 min read
Stable With Trikafta
Blog | 6 min read