Over the last year Dan’s health has been a battle and yet this still feels a little shocking. But it’s here, it’s time, & Danny needs a second double lung transplant.
The reasons for this rejection are varied. Most likely it was aspiration- stomach juices getting into the lungs- and the surgery last February to cut off the entry way may have just happened too late. It is what it is and this is the type of risks that just come with transplant life. Our doctors have potentially some other theories but our primary doc said it best “we don’t really have the time to figure it out and we can’t waste time, it’s time for transplant 2.”
As you can imagine this is difficult and unnerving process. Especially as it has been so vastly different from how we came to the first transplant. Three weeks ago Danny entered the hospital life via an emergency ambulance call and although he has been transported to other hospitals on his way to Hopkins, we have been told that now he likely won’t leave the hospital without new organs. Looking back doesn’t help, but I have had to wrap my head around the truth that transplant one we got the call and arrived to the hospital together, he walked himself into the prep room, and we even had time to feel a little nerves about wondering if this was the right timing. This time Danny is exceptionally sicker and we are at a point of desperation- we need new lungs.
However to get past these facts there is one perspective that I am carrying with me that has brought comfort and motivation: we have been given the option for a second transplant. No one has said “this is the end of the road” or “Danny doesn’t qualify” . In fact our primary Doc at Hopkins words that I will carry with me as a precious gift were: “I have known you both for a long time and I love you guys…. and I know you can both do this…. I know we can get Danny over this bump.” When you live a life that walks a line between sick and well you know these words aren’t said lightly and not offered to everyone. We have to find the comfort and incredible blessing in this expertise opinion and that this door has been opened to us.
Yesterday I made a few calls to some of our closer friends to let them know and several were pretty shocked. This turn of events has been quick and we have hesitated to share as we weren’t sure what would happen. Plus as you can imagine, we envisioned living this part of our life, 8 weeks out from meeting our daughter, to be very different. And to be 100% honest, I am going try that and hope to unburden my heart, we can’t do this life alone and that is really, really hard for us. The freedom the first transplant gave us to create a life and to feel it slipping through our fingers is gut wrenching. But that is the problem with being human – it is very limiting. And we can’t see how this all going to work…. but also Danny’s life, our marriage, our baby girl are all testimonies to God’s plans are so much greater than our own and perhaps we need this time to remember that…. to share that… no matter how it turns out. But I am human and it is still hard to except the help or not worry.
Additionally, the last few weeks we have gone from planning to list in a month to needing to list next Thursday to the news yesterday – Danny needs these lungs and we hope he will be listed no later than Tuesday. Things are happening quickly and we wanted to be able to deliver the news in a clean package with a plan – that is likely not going to be the case and probably a blessing as living in limbo is really hard for humans. So we are ripping off the band aid and sharing what we know.
Throughout our journey we have shared our faith and found the sharing of yours through prayer, has brought us so many blessings and so Danny and I discussed it – do we go public or not this time? And we have opted to share and in return ask for your prayers. Right now we sit in hopes of new life….. the start of life for our little girl, a chance for life for Danny, and renewed faith life as we battle the worries, anger and fear…. all while waiting for organs that can only come as a result of lost life. It is a very precious and tender space and we are thankful for the support.
The few common questions we have received when sharing I wanted to address: Danny’s score on the organ list is not changed by this being his second, but completely influenced by his health needs. Our Hopkins team is incredible and are working on getting me an OBGYN at Hopkins so I can deliver there and Danny can hopefully be with his girls. Our COTA account that many of your supported we will be using and thanks to the generosity from you all we are not in a place of addressing a need to fundraise again. Finally despite our fears or the human side to jump to worst case scenarios, we believe we will get these organs and eventually get back to life so we are working hard to keep my career on track, our home still in VA and our puppy well taken care of – and it does require juggling, but we know the value of it.
Thank you for the support and God Bless you all,
Jackie
Have A Little Faith in We 