Cystic Fibrosis Story: First Breath After Lung Transplant

First Breath After Lung Transplant

By Jennifer Jones and Rob Ronnenberg If you have seen the “First Breath After Lung Transplant” video of the breathing tube removal and the raw emotion on the woman’s face as she says “hi” to the respiratory therapist, then you know what we’re talking about. We are Jennifer Jones and Rob Ronnenberg from the small town of Byron, Minnesota just outside of Rochester, USA. I, Rob, am an office manager for the city of Rochester. Jennifer is currently a part-time photographer as she recovers from the double lung transplant she had in October 2017 at the Mayo Clinic. Once she is strong enough, she’ll be opening her studio and will be a full-time photographer fulfilling a long time dream of hers. Our story of how we became fans of the Cambridge Mask Company started not too long ago following the unexpected viral explosion of a video I took of Jennifer. She struggled with upper respiratory infections, pancreatitis, and “asthma” beginning with her mid-teens and worsening as her life went on. It wasn’t until she was 28 years old that Jennifer was diagnosed with Cystic Fibrosis.

If you are not familiar with Cystic Fibrosis, it is a genetic disease affecting multiple areas of the body with different severities, but mostly it affects the digestive system and lungs.

People with the disease struggle to breathe. The mucus in their airways that is supposed to protect them from particles and bacteria becomes thick and sticky. This traps bacteria and other pollutants they breathe keeping it in the lungs instead of clearing it out, which leads to infections and permanent lung damage that is irreparable. There are many mutations of the disease which have varying degrees of the severity. Eventually, the airways become clogged causing the lungs to fail, which necessitates a double lung transplant to survive.

Bringing us back to our cause, it all started with a video.

Jennifer’s health was dramatically declining over the last couple of years and after being on oxygen full-time for a year (almost to the week), she was admitted to the Mayo Clinic and told she would be there until receiving a transplant. After about 10 days in the hospital, her lung function was down to 10.8%. The same day she found out about this frighteningly low number, the call we had been waiting for finally came in. There were lungs available for her. Our first reaction was to be excited and happy; this meant she was going to have a chance to live. We called family and friends to share the good news with them. Following this came calm, and sorrow as our life-changing phone call meant someone else’s family was experiencing a tragedy. It was very surreal.
lung transplant Jennifer taking her first breath with her new lungs
Everything went well with the surgery, and she was progressing nicely when a few days later the doctors wanted to remove the breathing tube and let Jennifer begin to breathe with her new lungs unobstructed and unassisted for the first time. I decided to record it on my phone to share with her at another time and hoped to share with the donor family one day so they could see the miracle of life that came from their loss. I thought to post the video on a website specifically for keeping family and friends informed about Jennifer's status, but the site required the video be uploaded to YouTube and then linked onward. Little did we know this video would traverse the globe and have tens of millions of views across Facebook, YouTube, Snapchat, Reddit, and who knows what other social and actual media sources.

If you have seen the “First Breath After Lung Transplant” video of the breathing tube removal and the raw emotion on the woman’s face as she says “hi” to the respiratory therapist, then you know what we’re talking about.

Early on when the views were climbing and things were getting out of control (especially for a couple of people who live in a town of under 5,000 people which is literally surrounded by cornfields). We made a decision: This video was our chance to share a message with the world about the importance of organ donation and Cystic Fibrosis awareness. It was something we have freely permitted the use of to nearly everyone who has requested it while turning down every offer to buy it, sell it, license it, or make a profit from it in some way. Jennifer has been given this gift from a family we haven’t met yet; it is Jennifer’s miracle but their legacy to live on for a purpose. We want to honour the gift and give back by helping to spread the word about the vital cause of becoming a registered donor. lung transplant While this was all going on in the digital world, Jennifer was going to daily appointments at the hospital for everything required to help her get and remain as healthy as possible following her transplant. The first three months are the most critical and dangerous time for her as any illness, bacteria, or virus could be fatal with her compromised immune system and medicine regiment. She was weakened but needed to be at the hospital each day, the hospital with many other sick people who are there for treatment. We were encouraged to get a mask to help protect her in the hospital and public in general. We purchased a couple of masks we thought were doing just that. Not long ago we were contacted by the Cambridge Mask Company and asked if we would be willing to share our story in a blog post. Without knowing anything about the company, but being willing to help get the word out, we agreed to do this and asked if they would be open to sending us a couple of masks to try so we knew more about the product. At this point, we started doing some research and came across a startling, upsetting discovery. The masks are designed to prevent not just pollutants from getting into the lungs, but they also stop bacteria and virus particulates as well! Our situation is scary; you don’t know what to expect after a transplant; however, we are hopeful and excited. Jennifer is working to start her own business doing what she loves as a photographer. We get to raise our kids and be there for family and friends. She can live each day instead of trying to stay alive. Also on the horizon, we’re hoping in 2019, is the wedding. We’ve been postponing until Jennifer had new lungs and was strong enough to have her dad walk her down the aisle to marry me. We’ll probably follow this up with terrible dancing, but with her new lungs she can laugh and cry without worry, so we’ll do a bit of both along the way. Tomorrow is a gift. We've been given through the selfless act of organ donation. We intend to cherish it with each moment we have. Thank you for reading our story. Be a hero, register to be an organ donor. Cystic Fibrosis

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