The video of my fiancée has been making the rounds on countless news and social media sites all over the world in the last few weeks. Oh, and on Snapchat. That's when we hit the big time, according to Jennifer's teenage daughter. The video I'm referencing is of Jennifer and was filmed by Rob (me, her fiancé). Let us back up though and we'll get to why the video happened.
Jennifer struggled with cystic fibrosis her whole life, but wasn't diagnosed until 11 years ago when it was caught during newborn screening for her son. Although the diagnosis was scary, it answered a lot of questions. At this point her FEV1 (forced expiratory volume) was 65 percent. Fast forward to 2016, things started getting much worse. In October 2016, she was put on oxygen full-time and our lives changed. As time progressed we made decisions about our day based on how many oxygen tanks we would need and how long we had between her breathing and vest treatments.
By June 2017, Jennifer was listed for transplant and her health deteriorated further. The next few months got harder; she couldn't do a lot of things that the rest of us don't think twice about. She didn't go downstairs to tuck the kids into bed because coming back up the stairs was too difficult. Just taking a shower was exhausting; she had to stop to catch her breath and feared holding her breath for even a few seconds to wash her face. After more challenges, she was hospitalized in early October and told she would most likely be there until she received a transplant.
One morning her FEV1 tested at 10.8 percent. It's hard to describe Jennifer here without you knowing her, but to give you some perspective, I'll tell you she's the most positive and optimistic person I've ever known. Through all of this she had hope and didn't give up on the dream of a transplant that we were all so desperately depending on. That being said, it was a hope we never spoke about -- because of the potential of it never materializing.
But that all changed in an instant. We got “the call” that led to a lot of excitement and tears, calling family and friends to share the news and make preparations. With this also came somber moments. We thought about how our excitement came at a terrible price for another family who is grieving the loss of a loved one at that same time that our hopes had been realized.
Back to the video. A few days after the transplant, everything was going well and it was time to remove the breathing tube. My intention was to capture the moment on video to show Jennifer what we saw in that moment (when she was off the meds and could remember it), and hopefully share it one day with the donor family who made it possible.
Later that day, I tried to share the video with family and friends on a personal health journey website. However, you can't upload videos directly, so I had to upload it to YouTube and link to it. That was late in October and in early February of 2018 I asked Jennifer how many people she wanted to see her video. Her response was that if 10,000 people could see it then maybe some would become donors. At that point on Friday night it was climbing to 100,000 views on YouTube, and yes, I did laugh at her. Little did we know that by Saturday night it would hit 500,000 views. A week later, a Facebook story done by people we've never met would be approaching 50,000,000 views, and it is still climbing.
People have asked to buy or sell the video, but we've turned them down. As long as we are credited, we've let most people use it to share our message to spread CF awareness and the need for organ donation. Well, except for a few tabloids who asked, and we ignored them.
That brings us to now, what life is like after the transplant. I have said enough, so Jennifer is taking over and sharing her words here because she's living it:
There have been so many changes to the little things each day, like not having to plan ahead to go shopping or leave the house so we have enough oxygen tanks. I can go downstairs now to do laundry or tuck the kids into bed. Showering and getting ready without needing to sit down and catch my breath is wonderful. Not having to spend nearly all day hooked up to my vest, doing breathing treatments, or napping to survive is a major change. One of my favorite things I enjoy most is being able to truly, deeply laugh without going into a coughing fit. Speaking of coughing, my constant coughing is gone, which is odd for the people closest to me, especially my kids. My kids are excited to have a mom like they've never known before. For one, my son is excited to race me when the weather warms up. Something he's never done in his life. FYI, I intend to win!
Also, we've been engaged for over two years and now I'm healthy enough to walk down the aisle next to my dad toward the love of my life. This second chance is my miracle, but it is my donor's legacy.