Frencesca's Road to Transplant

As Frencesca’s family, we would like to preface this with our heartfelt gratitude to every single person that has reached out in all capacities. It means more to us than you will ever know. That said, here is a bit of Frencesca’s story.

For those of you who know Frencesca, know that despite spending a life with a classified “rare lung disease”, it’s been a life filled with joy, humor, love, quality and as much normalcy as possible. Yes. There were moments of concern when she was younger that were to be expected, but all in all, she’s maintained, sustained, and her body has successfully compensated.

March 11, 2019 is the date that would change all of that. The date that would change all of our lives. Especially hers. Following an unexpected lung infection, Frencesca ended up being hospitalized where she received a vigorous round of aggressive I.V. antibiotics in an effort to get her well. During this 9 day hospital stay, doctors performed a plethora of tests. Some routine, many diagnostic, to try to figure out the root cause of this major setback. Results ended up showing that in addition to her lung disease progressing, she also has moderately high pulmonary hypertension with her heart working much harder than it should. After no real success in initial treatments, it was then collectively decided that she needed to be at a bigger hospital with more targeted care and expertise. The hospital of choice was to be Mt. Sinai, the acclaimed satellite hospital to National Jewish Health Institute in Denver, Colorado. The number one pulmonary critical care hospital in the country.

Now under the continuous care of a world-renowned pulmonary team, doctors and scientists are working diligently to still get answers to her mysterious disease; while keeping Frencesca as stable as possible. As stable as her body will allow. Doctors are handling her with kit gloves. Frencesca is completely oxygen dependent, using between 3-4 liters upon any excretion. Unfortunately, there have also been a few additional setbacks, including the very unexpected discovery of pulmonary embolisms following a cat scan, which resulted in the placement of a filter into her main vein as a precaution to prevent any future blood clots from traveling to her lungs or heart. Again, kit gloves.

Doctors are adamant that all roads are leading to a double lung transplant.  In fact, the process has begun. Frencesca was already approved for the first step in the transplant evaluation, and is also in the process of getting approved to begin a rigorous pulmonary rehab program in New York City. In just a few short weeks, we as a family will be meeting with the transplant team for the second part of the evaluation. The doctors want her to be at her optimum health for when she is a candidate to be on the transplant list.

All of this shared, this is exactly why we are here. The expenses of the impending transplant alone are overwhelming to say the least. Frencesca is not working. The cost of living for her continues to mount. The cost of gas back and forth to the city each time. The hotels. The food. All of it. There’s just an incredibly long road ahead, and anything that you can give to lessen the burden is appreciated. There is power in numbers so even just spreading the word on this effort is more than we can ask for.

 

With sincere love and gratitude,

Frencesca and her Family.